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The past couple of months have turned our world upside down. The COVID-19 pandemic has spared no area from fear and uncertainty, Monroe County and the Finger Lakes region included. I am writing this letter at the beginning of April, as the number of our infections continues to rise. By the time this magazine reaches your hands at the beginning of Summer, we will hopefully be on the downward slope of our infection curve. Never has it felt more strange to deliver you a letter from the recent past. So much can change during the course of a month, so I can’t begin to speculate how this crisis will turn out for us. I do, however, feel confident in saying one thing: there is no other community I would rather be part of during this difficult journey then the city of Rochester and the Finger Lakes region. This is a generational event for all of us, and from the moment the first confirmed case was reported on March 11, our community has mobilized to meet this challenge, which has resulted in the slowing of our initial infection curve. Monroe County’s public health response — led by Michael Mendoza, M.D., has been both thoughtful and proactive. Our labs have ramped up testing capacity at a scale few other cities of our size can match. Medical and support staff at University of Rochester Medical Center and beyond — across all disciplines — have selflessly re-aligned their priorities to face this battle, and our surrounding community has stepped up immensely with production and donations of critical supplies. Our collective response to COVID-19 leads me to this issue of Strong Kids, which is our annual Miracle Kids spotlight. Reading these stories, you can see that the remarkable spirit of our community has been here all along. These are tales of families and caregivers who have been through hell and back, and who ultimately triumph through the trust, cooperation, and skill of all involved. Whether it’s the swift and effective coordination of our critical care teams, the innovative utilization of new genetic therapies, the steady competence of our oncology unit, or the strength and resilience of the children and parents who weather these traumatic experiences, you get the sense that our modest region could overcome any challenge. Of course, not all stories get to be miracles. Even the best treatment plans, the most skilled clinicians, and the most passionate parents can’t overcome the reality that not every sick child survives. I want to take a moment — particularly during this time — to express my deepest sympathies for the parents in our community who have experienced loss, and also extend my compassion to everyone in the region who has lost a loved one during this outbreak. You can rest assured that our Child Health Leadership teams have come together in unison across our region and developed a strong integrated care plan for all children as we move forward. My amazing teams have been working tirelessly on the front lines of care to support our adult colleagues where we can and continue to work with our community partners and other stakeholders to make sure we are doing the right thing to care for all of our community. The post-COVID-19 environment must ensure that we are able to keep a sustainable healthcare system to provide care and continue to address the overall health of our community on many levels. We are all in this together. I hope one day in the near future, we as a community can heal together — in our parks, schools, restaurants, athletic fields, and all other public spaces that we cherish. In the meantime, I hope these stories can light up your days as we struggle through this together. With Gratitude
Patrick Brophy, MD, MHCDS Physician-in-Chief, Golisano Children’s Hospital William H. Eilinger Chair of Pediatrics
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2020 Miracle Kids | Luke and Lilly McDonald
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Samuel Glaub p. 5 Eliyah Perry p. 9 Chiari Starling p. 13 Luke & Lilly McDonald p. 17 Jack Harrison p. 21 photos by John Schlia
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2020 Miracle Kids Jack Harrison
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Samuel Glaub Groundbreaking New Treatment Transforms Baby’s Future Catherine Glaub remembers exactly where she was — and what she was doing — when she got the phone call. “I was at home, holding Samuel in my arms, and I went into the bedroom to answer the phone,” she said. “It’s just one of those moments that’s burned into your memory forever.” Catherine and her husband, Jeffrey, had welcomed their new baby boy, Samuel, just a week earlier. He was born full term, weighing 8 pounds, 10 ounces — and so far, everything was going perfectly fine. But when Catherine picked up the phone that day, a doctor told her that Samuel was not as healthy as he appeared: he had a rare, genetic disease, spinal muscular atrophy (SMA), type II. The diagnosis —discovered through genetic testing done at the hospital in Buffalo where Samuel was delivered — meant that Samuel would likely never walk: He’d spend his life in a wheelchair and would deal with medical issues for the rest of his life. As Catherine hung up the phone, a million questions began running through her mind. Was her son going to have a normal childhood? Would he ever be able to kick a ball or run through the front yard? “I started shaking immediately,” said Catherine. “I was just in shock.”
A Turning Point SMA is the number one genetic cause of death in infants. In infants with type 1 — the most severe form of the disease — symptoms start appearing within six months, as babies begin to gradually experience difficulty breathing, swallowing, and moving. Left untreated, most babies with the disease die by their second birthday. Samuel was diagnosed with a less severe form of the disease, but was still expected to face a lifetime full of challenges. Children with type II are often in and out of the hospital with infections, struggle with maintaining their weight, and don’t meet physical milestones like sitting, crawling, and walking. Up until this past summer, treatment options for the disease were limited — and
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none were effective at truly halting the illness’ devastating symptoms. “I have been giving this diagnosis for many years, and it has basically been a death sentence,” said Emma Ciafaloni, M.D., the director of the University of Rochester Medical Center’s Pediatric Neuromuscular Program. “The babies are cognitively intact, and it breaks your heart to look into their bright, inquisitive eyes and know what their future holds. I have had to tell many families that there is nothing we can do for them.” But that all changed last year, when a new, groundbreaking treatment for SMA was approved by the Food and Drug Administration. The result of 50 years of research, the treatment is designed to replace the gene, SMN1, which is missing or not working in children with SMA. The therapy works by inserting a normal SMN1
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gene into the AAV 9 virus empty shell. The virus delivers fully functioning copies of the SMN1 gene directly to the patient’s motor neuron cells in the spinal cord. These healthy genes then replicate and help re-establish muscle strength. The treatment, marketed under the name Zolgensma, is the first in vivo gene replacement therapy. The clinical trials of the treatment showed transformative results: Babies who received the treatment as an experimental therapy have all survived beyond their second birthday, are talking, and have demonstrated improvement in their motor skills. Some children are now able to walk. “I never thought I would see this in my lifetime,” said Ciafaloni. “It’s the perfect example of how bench research can truly impact families’ lives and make a difference. It’s completely reenergizing.”
Hope for Samuel The new treatment was approved by the FDA just five days before Samuel was born. Within just two days of Samuel’s diagnosis, the Glaubs were at URMC, the only location in the state offering the treatment. “We knew this was the best hope for Samuel, and we knew the clinical studies showed great results,” said Catherine. “But it was scary. It was this brand new therapy, and we didn’t know what was going to happen.” The team in Rochester had been preparing to deliver gene therapy for months, and had already given it twice under compassionate use provisions, which allow use of an experimental therapy prior to FDA approval. “We are truly a leading edge center in our region,” said Debra Guntrum, a family nurse practitioner on the team. “We were ready to deliver this therapy before it was even approved,
and it takes many resources to bring this therapy to the bedside safely and effectively.” The Pediatric Neuromuscular Medicine Program, which cares for children with SMA, brings together neurologists, pediatricians, pulmonologists, nurses, physical and occupational therapists, social workers, genetic counselors, and orthopaedists to deliver care and support patients and their families. The team handles the complex process of delivering the new therapy, covering everything from bloodwork to complicated insurance approvals. After a series of tests and appointments with the team, Samuel received the treatment when he was four-weeks-old. The therapy is administered through a one-time, 60-minute IV infusion in the Pediatric Treatment Center, known to many families as “AC-6.” Samuel slept through the treatment and after a few hours of monitoring, he was sent home. “There was no real way of knowing if it worked,” said Catherine. “Our only option was to wait and see.”
“We truly have it all here,” said Ciafaloni. “And I’m proud of that, because it’s been a true team effort and we’re able to have a real impact on families.” The therapy, now FDA-approved for babies less than 2 years old, is more effective the sooner it is delivered. New York was one of the first five states to screen for SMA after birth, and now that an effective treatment has been identified, the focus is on expanding the genetic screening to all 50 states — so that all babies with the illness can be treated as soon as possible. “This new therapy is really an example of when everything works right,” said Ciafaloni. “It makes me optimistic about what’s to come.” The Glaubs, too, are confident about what the future will hold. While nothing is for certain, they feel fortunate that their son was born where and when he was — right at the cusp of a new beginning for children with SMA. “Everything was on our side,” said Catherine. “How lucky are we?”
“I never thought I would see this in my lifetime.”
A New Future Today, Samuel is 10 months old. He’s crawling, smiling, and getting into everything — all the things a baby should be doing. And he’s not showing any signs of the disease. “He is doing beautifully,” said Ciafaloni, who sees Samuel on a monthly basis to check on his progress. “We don’t know what his future holds. But, unequivocally, his future is dramatically different than it would have been without this treatment.” The team has now treated 10 babies with SMA through this gene therapy, all of whom have not had the typical progression of the disease. Families have come from the Adirondacks, Pennsylvania, and Syracuse to receive the treatment. In addition to offering the new therapy, URMC was also one of the first four institutions in the country to receive the Cure SMA Care Center Network designation, created to set new standards of care, expand access to novel treatments, and conduct clinical trials.
Samuel Glaub with his father, Jeffrey, mother, Catherine, and sisters Emma and Julie
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Eliyah Perry Infant with multiple congenital defects rallies to beats the odds “Eliyah’s on her way, Eliyah’s on her way On her way to her family’s farm We will miss her, we will miss her Her smile and her sweet charm” A group of hospital staff gathered at the exit of the Golisano Children’s Hospital (GCH) lobby, singing and clapping to the small baby, who sat wide-eyed in her stroller. Rocking sparkly gold pants, the baby wore a shirt with the word “strong” scrawled across it. Tubes were connected to the infant’s body, keeping her alive. “Look at her,” said a staff member excitedly, as the baby kicked her little feet to the gentle strums of the guitar. The baby’s mother grabbed her husband’s forearm, trying to hold back her tears. She did not break down until a staff member handed her a congratulations card. After four months at GCH, parents Kurtis Perry and Jeshurun Periannan were finally headed home with their daughter, Eliyah. They had only recently furnished her nursery. “We were so scared,” said Jeshurun. “We didn’t want to make something and have to come home to an empty room.”
Diagnosis after diagnosis Jeshurun and Kurtis had been through ultrasounds before. With two healthy girls, they expected another routine pregnancy. But doctors saw issues in Jeshurun’s first ultrasound. 12 weeks into her pregnancy, they could see Eliyah had a cystic hygroma — a fluid-filled sac caused by a blockage in the lymphatic system — on the back of her head. The sac was almost the same size as her head.
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In addition, doctors discovered a rare defect — organs protruded through a hole in Eliyah’s abdomen, leaving those organs outside the body covered only by a thin membrane (an omphalocele). By 20 weeks, doctors at the Strong Perinatal Associates in Red Creek had found another
defect. Eliyah had a severe congenital heart disease, called Tetralogy of Fallot (ToF). ToF is a combination of four related heart defects that limit the amount of blood that can be pumped from the heart to the lungs, resulting in low oxygen levels. Nineteen weeks later, Eliyah was born on May 13, 2019 at GCH in a room full of medical professionals ready to give her care. Like any expectant mother, Jeshurun wanted to be with her daughter after birth. But she had to wait almost 24 hours because the Neonatal Intensive Care Unit (NICU) team immediately whisked Eliyah away to begin treatment. “When we called to see if I could see her that evening, they said that she was so bruised up, and Eliyah with parents Kurtis Perry and Jeshurun Periannan
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from everything I had to do, it would have been too much for me traumatically to see her,” said Jeshurun.
‘Outside our normal’ Eliyah first received care at the NICU. Luckily, her omphalocele was smaller than doctors had expected it to be. The cystic hygroma had disappeared. But her heart defect was significant. Eliyah’s omphalocele prevented her from breathing on her own. To help keep Eliyah stable, doctors used a breathing tube connected to a ventilator. A smaller tube fed her through her nose. Doctors wanted to fix her heart defect, but Eliyah’s omphalocele was in the way. “She would have had cardiac surgery if not
for the omphalocele,” said Jill Cholette, M.D., Chief, Pediatric Intensive Care. “We had to go sort of outside our normal.” They planned to postpone Eliyah’s heart surgery until they had the physical space to open her up — Eliyah needed to get bigger, and her omphalocele needed to get smaller. To manage her omphalocele, the NICU team used a burn cream that had silver in it. The cream promoted skin to grow over the omphalocele by keeping it in a moist environment. Dressings were used to wrap the omphalocele. As Eliyah’s parents put it, “Frost it like a cupcake, wrap it like a wonton.” The NICU team also monitored Eliyah’s respiratory status around the clock, making sure her oxygen levels were adequate. The cardiac team administered a medication that kept a blood vessel open so Eliyah could get blood to her lungs to be oxygenated. But as the weeks went by, NICU nurse Carol Schreiber noticed Eliyah’s oxygen saturations were dipping even with extra support from the ventilator. And then Eliyah’s parents got a call. Eliyah was being moved to the Pediatric Cardiac Care Center. Susan Martin, M.D., a pediatric cardiac intensivist, remembered admitting Eliyah from the NICU. She also recalled the night that soon followed when she did not know if Eliyah would make it to the morning.
Remarkably, Eliyah stabilized. She was sent to the cardiac catheterization lab where Rajiv Devanagondi, M.D., performed a procedure that opened up a valve in her heart, allowing more blood to get to her lungs. But Eliyah was still unable to breathe sufficiently without a breathing tube. When her heart rate plummeted during a test with the tube out, Eliyah’s parents asked for the pulmonology team to take a look. They found that Eliyah’s bronchi — which shuttle air to and from the lungs — lacked proper support. With this new diagnosis, the ear, nose, and throat (ENT) team put in a tracheostomy (trach) to help her breathe. Even with her new scar, Eliyah continued to smile. She loved it when GCH’s music therapy team sang her favorite song: Down on Eliyah’s Farm, a song they assembled for her. As Eliyah improved, her parents learned how to care for their daughter’s needs. Kurtis used to get queasy from a blood draw; now, he willingly cares for Eliyah’s trach and her feeding tube. After the rollercoaster of ups and downs, Eliyah was finally discharged from GCH in September of 2019. Her parents brought cupcakes that looked like omphaloceles as a treat for those who gave Eliyah care. “It was one of the hardest and most beautiful days when we were saying goodbye to a family we had created up there,” said Jeshurun.
A miraculous improvement
At home, Eliyah grew bigger until she was able to have heart surgery at 8 months. Director of Pediatric Cardiac Surgery, George Alfieris, M.D., performed a complete ToF repair, giving Eliyah a new pulmonary valve and closing the hole in her heart that was diverting blood from her lungs. The surgery, which lasted more than eight hours, was complex. Eliyah was at a higher risk due to her omphalocele and tracheostomy residing close to the surgical site. “Eliyah’s chronic lung disease from her need for mechanical ventilation and her higher risk of infection from the tracheostomy increased her risk for post-op complications,” said Cholette. But Eliyah came out of surgery with no cardiac complications and an excellent surgical result.
Eliyah’s blood pressure was low, and her tissues lacked oxygen. She was not improving with Martin’s treatments, so Martin called in pediatric nurses, her colleague Cholette, and even the surgical team. “I’m worried enough that if I can’t get her to turn around and get her blood pressure up that I’m going to need to put her on a life support machine,” said Martin. Martin had told Eliyah’s parents that they were going to keep fighting, but she was unsure Eliyah would rebound. Jeshurun remembered holding her daughter’s hands and pleading. “Baby girl, you’ve got to keep fighting,” said Jeshurun. “You’ve got to come home to your sisters.”
Home at last
Since then, Eliyah continues to impress. Her omphalocele, now barely noticeable, is tucked underneath the skin she grew over it. Her respiratory issues have improved. Her stitches from surgery are healed, and her heart is doing well. “She has at this point overcome everything that has been thrown at her, and she’s thriving physically,” said Marissa Smith, one of Eliyah’s NICU nurses. Eliyah’s cardiac, pulmonology, and ENT teams continue to monitor her monthly. Eliyah may need more surgeries, but for now, she has beaten the odds with help from the GCH’s multidisciplinary effort. Cholette estimates that around 100 people provided Eliyah and her family with care. “There are a lot of hospitals that could not have done this, and I think that this really showcases what our children’s hospital can do,” said Cholette. Nearing her first birthday, Eliyah is working now on being a baby — sitting up, rolling over, and playing with her sisters. “While she’s not at where a number of kids her age would be, she is totally catching up,” said Martin. “Socially, she has always been there.” Eliyah still adores music. She tries to join in now with the little girl band her father created for his daughters. “The older girls get the ukuleles out, and daddy gets the guitar out,” said Jeshurun. “They all come together, and they sing to her.”
Down on Eliyah’s farm, there is a red-roofed house Down on Eliyah’s farm, there are chickens and dogs Her mom and her dad are there too With her sisters, Aria and Lulu
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Chiari Starling Skilled Intestinal Surgery Helps 5-Year-Old Eat on his Own Despite Long Odds
Before he was even born, Chiari Starling faced a serious health issue. Doctors had prenatally diagnosed him with gastroschisis, a rare condition — affecting 3 to 4 of every 10,000 children — in which infants are born with a portion of their intestines outside of the abdomen. “We didn’t know the severity or the complication that it would have on his life,” said Chiari’s aunt and legal guardian, Crystal Starling. Chiari was born on November 11, 2014 — seven weeks premature. Soon after delivery, he was taken to the operating room to have his intestines put back in his abdomen. Chiari recovered well from the surgery and remained in the hospital for about two months. During this time, Chiari’s medical team and family worked on feeding him through intravenous (IV) fluids and helping him grow appropriately. “Our first thoughts were fear, and then worry that he was so young and tender and having to go through something like that,” Crystal recalled. Shortly after being discharged home, Chiari was brought back to the hospital — critically ill. He was soon diagnosed with necrotizing enterocolitis (NEC), a condition that is characterized by necrosis, or death, of the intestinal tissue. NEC is another rare and life-threating condition that affects 1 to 3 babies every 1,000 births. It’s usually diagnosed in infants who are born prematurely. When Chiari was taken to the operating room, the surgeon found that Chiari only had 11 centimeters of small bowel — massively below the 200-250 centimeter average for a child at birth. It was such a small amount that the surgeon remarked in his operative note that he feared it was “incompatible with life.” In addition, Chiari faced a third diagnosis caused by NEC: ultrashort bowel syndrome (USBS), a condition where the length of bowel is less than 10 percent of what is expected for a particular age.
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Approximately one third of infants with USBS have died by the time they’re 6 years old. Surviving infants are faced with a 47 percent chance of their bowel being able to absorb all the nutrients it needs to live and being about to wean off the IV. Many of these patients had more bowel than Chiari.
Chiari with Aunt, Crystal
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Given the odds, Chiari faced the strong possibility of having to continue to rely on an IV for nutrition for his entire life, which can be further complicated by serious blood stream infections, liver failure, and loss of central venous access options over time. Chiari continued to show
great resilience for being so young and fragile and quickly recovered from this surgery, although he had to receive all of his nutrition through IV. For Chiari’s family, the time he spent in the hospital was overwhelming and scary. “At times I felt like there was no hope,” shared Crystal. “It’s a bottle of emotion.” It seemed to be an uphill battle with no end in sight: Chiari was hospitalized 15 times in the first two years of his life with complications associated with his central line. He had suffered life-threatening infections, sepsis, and the ability to feed him was severely limited due to his inability to absorb nutrients in what was left in his intestine. Due to the ongoing need for IV-based nutrition, he was diagnosed with intestinal failure. In an attempt to improve his condition, Derek Wakeman, M.D. assistant professor in the Department of Surgery, and Walter Pegoli Jr., M.D., chief of Pediatric Surgery, performed a serial transverse enteroplasty procedure (STEP) to surgically lengthen Chiari’s intestine when he was 10 months old. STEP is an innovative procedure that was first introduced in the medical field in 2002 and requires advanced surgical expertise. Doctors also connected the small intestine to what was left of Chiari’s colon to take advantage of the water absorption there. Before this surgery, Chiari wasn’t allowed to stay home because of the treatment he needed, which required a tube in his stomach to suck out the contents because his intestine wasn’t working. After this surgery, Chiari was able to steadily improve with feeding and close-monitoring that required meticulous care both in and out of the hospital. He had weekly blood work, follow up phone calls, and frequent office visits. Due to the tireless efforts of the GCH caregiving team and the support of Crystal, Chiari was able to be taken off the IV and start eating regularly by his third birthday, and now he now has no tubes at all and is thriving. “Being able to wean off total parenteral nutrition completely in such a relatively short period of time after having only 11 centimeters of small bowel left is truly remarkable,” said Wakeman. “We know that there are certain foods that can enhance the bowel’s ability to adapt after massive
bowel resection. I think this is a testament to the intestinal failure team and his family for really encouraging him to eat a variety of healthy foods.” “Here at Golisano Children’s Hospital we are privileged to be able provide advanced care for patients with intestinal failure,” said Megan Gabel, M.D., assistant professor in the Division of Pediatric Gastroenterology, Hepatology and Nutrition, who was involved in his care. “We have all of the key elements needed to consistently deliver optimal care for these children. A strength of our program is the multidisciplinary team that finds joy in treating complex patients like Chiari.” Both doctors and Chiari’s family credit his survival to the “village of providers” that helped care for him. From staff to nurses, social workers, dieticians, physicians, and most importantly his family. “I couldn’t ask for a better team to have worked with,” said Crystal. Chiari does have some lifelong effects from his conditions and treatment. His left leg is a little
longer than his right leg because of a complication with blood flow during his hospitalization. But he recently got a “lift” for his shoe and wears a brace when he’s active, and when you ask Crystal how he’s doing now, she’s quick to respond, “Excellent!” The one thing he loves to do most? Eat. “From sun up to sun down,” says Crystal. Chiari also enjoys writing, reading and music, and engaging in the general silliness of a being a young boy: “He likes to dance and loves gorillas. He thinks he’s King Kong and talks about going to the moon every day,” says Crystal, “whatever he does, I hope he leaves a positive impression.” He has certainly left a positive impression on his medical team at GCH.
“We have all of the key elements needed to consistently deliver optimal care for these children. A strength of our program is the multidisciplinary team that finds joy in treating complex patients like Chiari.”
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Luke & Lilly McDonald Effective Care-Coordination Helps Siblings Recover from Horrific Accident On a nice a summer evening last July, Jamie McDonald was walking his two kids, Luke, 1, and Lilly, 2, in a wagon to the Wegmans on Lyell Avenue in Gates. As they made their way through a parking lot across the street from the store, Lilly said “dada” to get Jamie’s attention, and he noticed that she had dropped her pink bunny on the ground. Jamie picked the bunny up and started wheeling the kids back to the crosswalk. He then looked up and noticed that a car was headed toward the curb, straight at him and the kids. He yanked the wagon as quick as he could, but the car was too fast; it hit the wagon and dragged Luke and Lilly 50 feet into the parking lot. Jamie sprang into action. “I ran to the car as fast as possible on my hands and knees to see if the kids were ok, saw that their eyes were open, and tried lifting the car.” A nearby Samaritan called an ambulance, and helped calm Jamie down while the Emergency Medical Services (EMS) team was en route. The EMS team arrived and found that both kids were still breathing on their own. They had survived the initial horrific impact, but the challenges were just beginning. While they we being transported — Jamie in one ambulance with Lilly, Luke in another — both kids started showing signs of decline and were put on ventilators when they arrived at the hospital for stabilization, initial assessment, and imaging.
Two Complex — and Urgent — Challenges Upon assessment, both Luke and Lilly had internal injuries, broken bones, and multiple lacerations, but it became clear that both were in life-threatening condition for two different reasons.
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Brother Zach, and father Jamie, with Luke and Lilly McDonald
Luke had suffered a fractured skull, a significant head injury, and huge lacerations. An immediate operation was needed to remove the gravel and glass that had entered his skin, skull and eye. Fortunately, Lilly did not suffer a significant head injury, but her condition was even more precarious. In addition to her extremely deep shoulder wound, she had injured her adrenal glands, which produce a life-sustaining hormone, epinephrine. “Epinephrine is produced in response to stress. As a result, her body was not able to respond to the injury the same way Luke’s was,” said Jake Deines, M.D. associate professor in the Division of Pediatric Critical Care and one of the ICU physicians who cared for Luke and Lilly. As a result, Lilly’s life was at risk due to complete cardiovascular failure. “We needed very aggressive treatment of her low blood pressure, exaggerated heart rate, and poor circulation of blood.” Both of their cases were incredibly complicated and required immediate coordination of a huge team of medical providers, including pediatric surgeons for
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Sister Abbie, brother Aiden, and mother Candace with Luke and Lilly
orthopaedics, trauma, neuro, plastic, and ophthalmology. Fortunately, the Pediatric ICU was prepared. “All of these very specialized services were immediately available here at Golisano Children’s Hospital,” said Deines, “in addition to performing the life-sustaining therapies in the ICU, we coordinate all of the teams and function as a quarterback so dozens of team members can act in a unified way.”
Treatment and Recovery The critical care team engaged in a step-bystep process to manage both Luke’s and Lilly’s conditions. “In spite of being involved in the same accident, they required very unique therapies — Luke needing mostly neurotrauma care, and Lilliana needing mostly shock and circulation support,” said Deines. Luke first received neuro and plastic surgery, where they washed out the glass and gravel debris in his head and placed a monitor inside of his brain tissue to measure for swelling and increased pressure on his brain. Lilly, on the other hand, needed mostly
circulation support to boost her body’s stress reaction. Her caregivers put her on a continuous epinephrine drip to stabilize her and performed frequent blood studies and exams to ensure her injury hadn’t affected her in ways they didn’t anticipate. Both Luke and Lilly were given pain medications and placed under sedation to minimize any distress, and ensure they wouldn’t remember the harrowing experience. Additionally, both were given antibiotics to prevent infections from the open wounds. While this was happening, the GCH team did everything in their power to meet the McDonald family’s needs during the process. “We focus on family-centered care,” said Deines, “we involve the families from the first moment they arrive and provide consistent updates and explanations of the care we’re giving. We also enlist the help of our wonderful social workers and other support groups.” Considering the emotional trauma he had just experienced, this interaction was critical for Jamie, and he credits the GCH team for keeping him calm and communicating regularly. “They did a great job coming out and keeping me
updated on what was going on, and letting me know when my kids were good.” McDonald particularly credits his assigned social worker, Jeffery Rideout, for providing an emotional outlet for the family during the process and for being helpful with day-to-day needs such as parking passes. “He was there day in and day out checking in with us,” said Jamie. Fortunately for Luke and Lilly, the surgeries were successful and their recoveries were relatively quick. After surgery, Luke got his ventilator tube out within a week, and Lilly had hers removed a few days later. They both were able to be transferred from the ICU several days afterward. “The general pediatric unit had a largeshared room where the siblings could be together,” said Deines, “I visited them before they were discharged. Luke was throwing a ball, and Lilly was laughing. The progress they made was fantastic.”
“In spite of being involved in the same accident, they required very unique therapies — Luke needing mostly neurotrauma care, and Lilliana needing mostly shock and circulation support.”
The Road Back After being discharged from Golisano Children’s Hospital, both Luke and Lilly spent a few weeks in long-term care before heading home. Overall, they spent only a month at the hospital after the initial injuries. The work is yet to be complete, however: Both children have been going to inpatient rehab. Lilly’s shoulder wound and burn rash on her leg are in the process of healing, and Luke has had several surgeries to minimize the longterm effects of his head injury, and will need an eventual procedure to replace the missing piece of his skull. In addition, he will need skin grafts to help his hair grow back. Despite these challenges, there is a strong potential for a full recovery for both children. Considering that both came simultaneously and required very different therapies, it is remarkable that they recovered so quickly from what could’ve easily been a fatal injury, according to Deines. “We focus on life-sustaining therapies and we rely on the team we have, which includes an incredible group of nurses who are highly trained in pediatric intensive care, and an amazing group of fellows and residents, specialists and subspecialists,” he said, “the outcome could’ve been different, but thanks to everyone involved, it’s a happy ending.” Golisano Children’s Hospital
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Miracle Kid 20
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Jack Harrison A Journey Home to Rochester Brings Successful Treatment for Brain Tumor Jack Harrison’s first symptoms seemed innocuous enough. The 6-yearold was reluctant to climb onto the swings at the playground, and his motor skills slipped slightly. His parents, Rochester natives Eric and Sara Harrison, had just moved the family from Texas to Germany, where Eric, a U.S. Army officer, had been stationed. Maybe Jack was just having trouble adjusting, they reasoned. When Jack’s teacher sent home before-and-after handwriting samples, however, the change was unmistakable, and alarming. Doctors quickly ordered an MRI. The Harrisons received the grim results on May 24, 2018. “Their English wasn’t really up to par, and all they kept saying was, ‘He has a brain tumor, we’re sorry,’” Eric Harrison recalled. “They kept saying, ‘We’re sorry.’” “It was like living in a vortex for the next number of weeks as we kept learning more and more about the tumor,” Sara Harrison said. It was the beginning of a long journey, which eventually led them to Golisano Children’s Hospital, where doctors, nurses and support staff helped the family fight Jack’s cancer. “I always say that the oncology team are the people you never want to make friends with — but, oh my God, they were our first and best friends when we came to Golisano, and they’ll be our family forever,” Sara Harrison said.
Coming Home to Rochester Jack was diagnosed with an astrocytoma, one of the more common types of brain cancer, and the tumor was lodged deep in the middle of his brain. One German doctor thought he could operate. Others advised against it. Knowing they needed a second opinion, the Harrisons initially turned to the Children’s Hospital of Philadelphia, which confirmed the tumor was inoperable.
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The Harrisons needed that source of calm. While the Army provided Eric Harrison with a quick transfer, Jack continued getting worse as the family packed up, moved and settled in Brighton. He was unable to attend school full time. His vision deteriorated, and he stared falling down. Climbing stairs or getting into a car without help became impossible. In November 2018, he was given a wheelchair. “We were seeing his motor skills deteriorate one by one,” Sara Harrison said.
Fighting Back
The doctors in Philadelphia suggested a 60-week chemotherapy regimen, the standard treatment for the type of tumor Jack had. But the Harrisons wanted Jack treated in Rochester, where they had a strong support network. Phone conversations with David Korones, M.D., professor of Pediatrics, Oncology and Neurology at the Golisano Children’s Hospital, clinched it. Korones, who also recommended the 60-week chemotherapy plan, became both the guiding force in Jack’s treatment and a constant source of reassurance to the family. “Dr. Korones was wonderful from the beginning,” Sara Harrison said. “He told us, ‘When you get here, everything will be all right — just worry about getting here.’ He was a calming voice the whole way through.”
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Golisano Children’s Hospital sees about 20 to 30 children with newly diagnosed brain cancer every year, and about 10 to 15 of them have astrocytomas. The tumors respond well to radiation, but that type of therapy can have a longstanding impact on young children’s ability to learn and process, so they are often treated with chemotherapy, Korones said. Jack received a combination of two drugs, carboplatin and vincristine, which have a good track record against astrocytomas. But that didn’t mean the treatment was easy, or fast. As sometimes happens, Jack continued getting worse during the first few weeks of his treatment. The turning point came after a scan revealed excess fluid on his brain, a condition called hydrocephalus. “The tumor was choking off the normal drainage channel, causing Jack’s ventricles to swell,” said Howard Silberstein, M.D., professor of Neurosurgery, Orthopaedics, Pediatrics and Neurology. “The swelling puts pressure on nearby areas of the brain, leading to headaches and other symptoms.” In May 2019, Silbertstein performed a procedure called an Endoscopic Third Ventriculostomy, which involves creating a new opening at the base of the third ventricle through which fluid can drain. “The result is that the patient feels better, and the headaches go away,” Silberstein said. “The brain functions better.” Jack — the old Jack — began coming back. His cognition improved. And not only that: His chemotherapy regimen began shrinking the
tumor. By June, Jack could not only get in the car by himself but buckle his own seatbelt. His mom cried each time she heard it click. “It’s the little victories that you celebrate,” she said. “Summer swimming. Getting on the school bus. Things I thought he would never do again.” Through it all, the Harrisons remained steadfast. “I was deeply impressed with the family,” Korones said. “They kept level heads despite what can be an overwhelming experience, and they were zealous advocates for Jack.” Encouraged by Golisano nurses and support staff, Jack also became an advocate for himself. When he let them know he didn’t like the smell of alcohol wipes, for example, they gladly let him wear a mask.
Returning to Life On Nov. 21, Jack finished his final infusion. His mother remembers the moment. “Jack, that’s it,” she told him. “That’s it?” he replied incredulously. “I’m done?” If there was any doubt, it was dispelled when about 60 people, including family, friends and members of Jack’s care team, gathered in the lobby to watch Jack ring the chemo bell. The Harrisons had a lot to celebrate, then and now. While Jack’s tumor is still present, it shrank significantly during treatment, and his first follow-up scan showed that it was stable. He’ll return for more scans every three months, but in the meantime, he’s started second grade, and resumed the activities typical of the energetic 8-year-old he’s become. “He’s a completely new kid,” Eric Harrison said. “We call him Jack 2.0. He’s sledding with his brother. He snowboarded last week.” “He’s taking advantage of everything,” Sara Harrison said. “He’s in a play, he’s going to take guitar lessons soon, and he aspires to be a singer-songwriter when he grows up. I can’t wait to see what he does, because if he can overcome this, he can do anything — and he will do it with empathy because he has walked in these shoes.” Meanwhile, the family has been able to settle in Rochester for the long-term, buying a home in Fairport, meaning Jack will continue to see the care team that made his recovery possible. For
that, they are grateful — and not only because of doctors like Korones. “Child life specialists worked with Jack, and nurses helped us navigate the process,” Sara Harrison said. “I couldn’t have gotten through this without having the guiding light that we did in the nurses.” Korones, meanwhile, sees a bright future for Jack, with many effective treatments available if the tumor ever does start to grow again. URMC physicians often see positive outcomes with patients like Jack, but the degree to which he has recovered delights his care team. “We couldn’t be sure we’d get him back to where he was,” Korones said. “Outcomes like this really help me appreciate the beauty of the simple things in life — just seeing him walk into clinic
unassisted, for example.” For Jack, the return to school has been the best part. He likes having more time for friends and being able to explore his interests. But like his parents, he misses the members of his care team who became a second family, and he has simple message for them: “I love you.”
“He’s a completely new kid. We call him Jack 2.0. He’s sledding with his brother. He snowboarded last week.”
Jack Harrison with brother Eli, and parents Eric and Sara
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2020 Miracle Maker Awards
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Outstanding Commitment by a Corporation
Outstanding Commitment by a Community Group
Last November, Bank of America (BOA) announced it was awarding a $250,000 grant to University of Rochester Medicine’s Golisano Children’s Hospital (GCH) to support the construction of the new Golisano Pediatric Behavioral Health and Wellness Building in Rochester. This twostory, 36,000-square-foot facility will immediately increase the available space for outpatient and partial hospitalization services for the GCH Pediatric Behavioral Health and Wellness Program, raising the number of spots available from 22 to 33. It will also allow GCH mental health professionals to intervene early to decrease bad outcomes and reduce more severe presentations and conditions, decrease emergency room and inpatient visits, and ultimately hopefully decrease suicide deaths and attempts. The Behavioral Health and Wellness building will bring outpatient and partial hospitalization services under one roof, and is constructed to add more intensive outpatient services that will allow children to receive a higher level of care than traditional services, while still attending regular school and living at home. The facility will also include the only partial hospitalization program of its kind in the state west of the Hudson River. Most importantly, the facility will also serve a vital need: the current partial hospitalization waiting list for the Finger Lakes region is up to 90 youth during the school year. “We applaud GCH for their proactive strategy and efforts to deliver child behavioral health services which is a critical need in treating young patients with emotional and behavior issues,” said Colleen Matteson, Bank of America Rochester market president. “Bank of America is proud to be part of this project that will ultimately
When Patrick and Megan Flint found out that their twins — Zoey and Morgan — would likely be born early and need heart surgery due to complications, they had the choice of receiving their care in New York City or at Golisano Children’s Hospital (GCH). They chose GCH. While Megan liked the doctors in NYC who performed surgery to correct the twinto-twin transfusion syndrome when she was 16-weeks pregnant, the Flint family felt much more comfortable with the support staff at GCH. With GCH being so close to home and having one of the top pediatric heart surgeons in the country, we felt GCH is “where we needed to be,” said Patrick, “and the nurses ended up becoming part of our family, they’re the ones that got it. They understood everything during this difficult time.”
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enhance the level of medical treatment available in the Rochester community.” Thanks to BOA’s contribution, the Golisano Pediatric Behavioral Health and Wellness Building is slated to open during the summer of 2020. Combined with GCH’s efforts to increase behavioral health screenings at primary care practices and schools. “Bank of America’s partnership will help us implement a comprehensive strategy that focuses on early recognition and treatment, as well as community partnerships, to help reduce the number of children at risk, and give families new reason to hope,” says Michael Scharf, M.D., associate professor in the Department of Psychiatry.
Zoey’s Tree Farm Zoey and Morgan were born three months early. The GCH neonatology team worked tirelessly to care for them. After three months in the NICU, Morgan was ultimately released from the hospital on her original due date. Unfortunately,Zoey passed two days later. Zoey’s passing motivated the Flint family to support GCH in her name. At first, they started their own team — Zoey’s Lovely Heart Club — and have participated in the Stroll for Strong Kids every year since 2016. “We quickly realized that we didn’t want to ask people to keep making donations, which ultimately lead to our decision to start planning a fundraiser,” said Megan. Later that year, the Flint family upped their ambition and decided to do something around Christmas. “It’s a season that can be rough on families who have lost loved ones or have children in the hospital,”
said Megan. They turned their front yard into a Christmas tree farm, made wreaths, decorated their yard and home, and offered free food and drinks to guests.“ It was all pulled together last minute, but we did it” said Patrick, “our friend had a connection to a tree wholesaler which helped.” Despite having limited time to plan everything, the Zoey’s Tree Farm event was a major success and raised $5,000 in year one. In subsequent years, the event has grown into a full-fledged festival with bonfires, a petting zoo, sponsors from local businesses, and guest appearances from Santa. Every year the Flints plan to make this event even bigger and better!“ We’ve tried to make it a big party for Zoey and make it fun for families and kids to come out on cold days,” said Patrick. In four years, Zoey’s Tree Farm has
raised more than $30,000 through selling sweatshirts, trees, and wreaths during the event. The Flints have also partnered with local businesses so children could decorate and stuff stockings as well as giftbags at the event to donate to sick children in the PICU during the holidays. In honor of the event’s impact, Zoey’s Tree Farm is the 2020 Miracle Maker awardee for Outstanding Commitment by a Community Group. Patrick and Megan credit family and friends who help put the event on, the loyal supporters who have helped grow the event, and the NICU nurses that come every year. “They (nurses) are the reason we chose care at GCH, and they continue to be wonderful supporters of us,” said Megan.
Outstanding Commitment by Individuals
Mark and Maureen Davitt When it comes to supporting Golisano Children’s Hospital, The Davitt family leads by example. Having already played a key role planning the 2019 Gala by serving as honorary co-chairs, Mark and Maureen Davitt took to the podium the night of October 19 and announced that they would be matching all donations given during the event. As a result, the gala raised an incredible $1.3 million. “We were very humbled to be asked to serve as this year’s honorary chairs,” said Mark and Maureen, who previously donated $2 million to support the new hospital building in 2018. “We feel lucky that we are able to be part of such a giving community, and we believe that it’s vital that we keep supporting the hospital.” The funds raised by the event will allow the hospital to purchase two dedicated pediatric ambulances. The state-of-the-art ambulances, designed specifically for children, will allow staff to transfer children from other facilities faster and with better, high-tech equipment. In honor of their invaluable stewardship of the Gala, they are the 2020 Miracle Maker Award winners for “Outstanding Commitment by Individuals.” The Davitt’s contributions are the latest in a long history of providing massive support to GCH. In 2018, their donation of $2 million contributed to the construction of the 8th floor unit at GCH, which includes several patient rooms, as well as the teen lounge and school room, which provide outlets for long-term patients to relax and study. For the Davitts, the children’s hospital represented an opportunity to support a group of patients that they’ve long cared about. Earlier in their lives, Maureen made her living as a pediatric nurse, and has seen firsthand the significance of being able to find care close to home. “We’ve always focused on the most vulnerable populations, and to us that means the people on both ends of the lifespan: children and those late in life who need hospice care,” said Mark Davitt. “Families shouldn’t have to move out of the area to find the best care for their loved ones.” Golisano Children’s Hospital
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2020 Miracle Maker Awards Outstanding Commitment by Grateful Parents
Michael and Kathy Amalfi Michael and Kathy Amalfi have a deep and personal connection with Golisano Children’s Hospital (GCH) that goes back decades. Shortly after their daughter Alissa was born in January of 1993, they noticed that she wasn’t developing normally. This began a long and difficult journey for the family, in which Alissa’s symptoms were very difficult and never fully diagnosed. They credit doctors at GCH for giving her good care, however, that helped her live well beyond the expected five years she was given. And during this time, they recruited one very important new supporter. “Kathy and I kept searching for
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answers, and during the process, we got my business partner Tom Golisano involved in the hospital,” said Michael Amalfi. The Amalfi’s advocacy played a critical role in bringing Golisano — the hospital’s namesake and primary benefactor — on board. Far from stopping there, however, the Amalfi family have been major supporters of GCH for the past 27 years. In 2001, they chaired the gala auction and helped develop the event into the major fundraiser it is today. When Alissa passed in 2016 after a long struggle, The Amalfis further strengthened their support of GCH. “Alissa touched a lot of lives, and when
she passed, we wanted to do something to keep her memory alive and keep giving to the hospital, so we created the Alissa Amalfi Memorial Fund,” said Michael. The Amalfis have held several successful events for for the fund, including the Havana Night benefit which recently raised $100,000. Due to the Amalfi’s contributions, the hospital was able to create the Alissa Amalfi Division of Critical Care, the only Pediatric ICU unit in the region that serves as the referral center for 1000 patients annually for critical injuries and illnesses, including trauma and burns. In addition, the Amalfi’s have been major supporters of the GCH cardiology program due to another personal connection: their grandson was born with a mild cardiac condition and received open heart surgery performed by George Alferis, M.D., shortly after birth. “Our recent focus is to give money to the pediatrics cardio unit because they save lives every day,” said Michael. In honor of their contributions, the Amalfi family are the 2019-2020 Miracle Maker Award winners for “Outstanding Commitment by Grateful Parents.”
Join us for the 24th Annual
GOLISANO CHILDREN’S HOSPITAL Join us
for the 24th Annual Stroll!
The Stroll for Strong Kids & 5K is going virtual! We will miss seeing you all at this year’s event, but we hope you will join us by holding your own Stroll or 5K in your neighborhood — while practicing safe social distancing. This year’s event will be dedicated to all of our front line health care workers and critical staff who are working tirelessly during this difficult time. Sign up to take part in the event here:
givetokids.urmc.edu/stroll
GOLF CLASSIC AUGUST 31 2020 A great day of golf on two private courses this year: Monroe Golf Club and Oak Hill East and West.
For more information or to register please call (585) 273-5948 or contact Betsy Findlay at bfindlay@ admin.rochester.edu.
If you’re already registered, you do not have to sign up again. More information will be released in the coming weeks. • • • • •
Each year, 86,000 kids from all New York State counties rely on Golisano Children’s Hospital for heart surgery, neurosurgery, treatment of lung disease, cancer, eating disorders and more. We offer the Rochester and Finger Lakes region’s only pediatric neurosurgeon, pediatric plastic surgeon, pediatric heart surgeons and so much more. Almost 800 children each year receive care in our Pediatric Intensive Care Unit (PICU) and more than 1,200 sick or premature newborns will visit the hospital’s Neonatal Intensive Care Unit (NICU). We are also partnering with the community to find more ways to keep healthy kids healthy. Your efforts improve the care of our children at Golisano Children’s Hospital, and, in turn, improve a child’s life. Golisano Children’s Hospital
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to benefit Golisano Children’s Hospital
For two days in February, WHAM1180, Mix 100.5, and 13WHAM-TV joined forces to share the many inspiring stories of many of our children and families. And when it was all over, the Cares for Kids Radiothon had raised more than $240,000 for the patients and families at Golisano Children’s Hospital. A huge thanks to the thousands of people who made donations throughout the two-day event — we are so fortunate to have an amazing community of supporters. Many groups volunteered to help answer phones, including our friends from Tops Friendly Markets, Walmart, the Henrietta Fire Department, the Rochester Philharmonic Orchestra, the Children’s Hospital and Board, and the team from Drabik Orthodontics. Thanks to the many volunteers for their time! Most of all, we’d like to thank the families who gave their time to come and support our efforts. For two days, the greater Rochester community listened to their stories, and learned just how important Golisano Children’s Hospital has been for many of them. Without the support of our community, our hospital would not be able to provide the world-class care that we are known for.
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Special thanks to our sponsors: Presenting Sponsor Tops Friendly Markets
Phone Bank Sponsor Rochester Philharmonic Orchestra Miracle Moment Sponsors Advantage Federal Credit Union Pettis Pools & Patio Salvatore’s Old Fashioned Pizzeria
Special Thanks to the following in-kind donors: Dunkin Donuts Grappa Restaurant Salvatore’s Old Fashioned Pizzeria Tops Friendly Markets Wisteria Flowers and Gifts
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Tha n k y o u!
We ar e extre m e ly grate ful to o ur co m mu n ity fu ndra is ers. Addison Thompson
Nazareth College Battle of the Beaks
Spirit of Halloween
Andy Nye
Roberts Wesleyan College
The Rainbow Classic
Ben LaMartina Birthday
Ski Day Invitational
Wahl and Clementi families and Paychex
Carpenters of Western New York
Colleagues
Cycle for Hope
Wingfest
Greece Athena Musical Theatre
Youth Chorus of the Fingerlakes
Golisano Children’s Hospital Board of Directors
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Mike Goonan, Chair* Daan Braveman Mike Buckley Al Chesonis Jeffery Davis Roger Friedlander Jay W. Gelb John Halleran James E. Hammer Howard Jacobson Todd Levine Scott Marshall Gary Mauro
Kim McCluski* Kathy Parrinello, R.N., Ph.D. Brian Pasley Dante Pennacchia Ann Pettinella Jenni Ralph* Mark Siewert* Mike Smith* Steven Terrigino Donald Tomeny James G. Vazzana Alan Wood Bruce B. Zicari II
Faculty
Ex-Officio
Kate Ackerman, M.D. Marjorie Arca, M.D. Susan Bezek, M.S., R.N., P.N.P. - B.C. Jill Cholette, M.D. Clinton Morrison, M.D. Michael Scharf, M.D.
Kellie Anderson* Patrick Brophy, M.D., MHCDS Steven I. Goldstein Jennifer Johnson Douglas W. Phillips R. Scott Rasmussen* Kelly McCormick-Sullivan Mark Taubman, M.D.
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Honorary Members Michael Amalfi Bradford C. Berk, M.D., Ph.D. Joseph L. Carbone, D.P.M. Mitchell Chess, M.D. David F. Christa Judy Columbus John L. DiMarco II Wanda B. Edgcomb Harvey B. Erdle Timothy D. Fournier Jack Goodrich Deborah Haen Nick Juskiw Richard E. Kreipe, M.D. Elizabeth R. McAnarney, M.D.* Thomas McInerny, M.D. Karen Powers, M.D. Gail Riggs, Ph.D. Nancy Robbins Jeffrey Rubenstein, M.D., M.P.H. *Executive Committee
Upcoming Community Events
Golisano Children’s Hospital Advancement Office
585.273.5948 | www.givetokids.urmc.edu
Note: events subject to change due to COVID-19 crisis. Please check the following website for updates: https://www.urmc. rochester.edu/childrens-hospital/ways-to-give/events.aspx May 30 Virtual Stroll for Strong Kids The Stroll for Strong Kids & 5K is going virtual! We will miss seeing you all at this year’s event, but we hope you will join us by holding your own Stroll or 5K in your neighborhood — while practicing safe social distancing. This year’s event will be dedicated to all of our front-line health care workers and critical staff who are working tirelessly during this difficult time. Sign up to take part in the event here: www.givetokids.urmc.edu/stroll. July 23 Dairy Queen Miracle Treat Day Henrietta, Greece and Webster locations Get ready for a cold front! For every blizzard purchased at a local Dairy Queen, $1 will be donated back to our children’s hospital. customers can also make a donation to the hospital by purchasing a miracle balloon at the register. August 28-29 Fairport Music Festival This fun-filled event, located along Fairport’s Liftbridge Lane, is great for the whole family! Enjoy two days of good music and food for a great cause. Fairport Music Festival has impacted the Golisano Children’s Hospital in a number of ways. Visit www. fairportmusicfestival.comfor more information. August 31 Golf Classic Monroe Golf Club and Oak Hill East and West Courses A great day of golf on three separate courses! For more information, or to register, please call (585) 273-5948 or contact Betsy Findlay at bfindlay@admin.rochester.edu.
Scott Rasmussen Sr. Assistant Vice President for Advancement Betsy Findlay Sr. Director of Advancement, Special Events and Children’s Miracle Network John Belt Advancement Assistant Meghan Barnhardt Associate Director, Community Affairs Adam Giglia Associate Director, Major Gifts Katie Keating Program Assistant Jennifer Paolucci Assistant Director, Special Events and Children’s Miracle Network
Public Relations and Communications 585.273.2840
Scott Hesel Sr. Public Relations Associate Jessica O’Leary Public Relations Associate Patricia Cruz-Irving Public Relations Associate Kathleen Mannix Art Direction & Design Cover photo: John Schlia
Find us on social media: facebook.com/GolisanoChildrensHospital twitter.com/urmed_gch instagram.com/urmed_gch Golisano Children’s Hospital
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University of Rochester Office of Advancement and Community Affairs 300 East River Road PO Box 278996 Rochester, NY 14627-8996
This event is subject to change based on COVID-19 restrictions that may be in place.
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To make a donation online go to givetokids.urmc.edu
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