Harper Dale: Spreading Sunshine

Harper Dale

Spreading Sunshine

Over 10% of children worldwide are diagnosed with a terminal illness, which is around seven million children. These children live very different childhoods than the majority of children. After diagnosis, these children will go through countless hospital visits, doctor’s appointments, and excruciating pain, which does not allow many to attend school with other children their age. In addition, the hospital is “home” for thousands of children living with terminal illnesses. Therefore, these children spend most of their lives around adults (doctors and family) and do not get to be around children their age, often causing them to feel isolated and alone. When children have an illness so severe to warrant their confinement to a hospital for long periods at a time, “many children report feeling lonely and scared,” as they are taken from the safe, familiar environment of their home and forced to live in an unfamiliar, uncomfortable place which serves as their “new home” (“Coping with Stress Reactions after Injury or Illness”). Additionally, many children can be traumatized by hospital stays. Studies show that 20-25% of children admitted to the hospital after sustaining an illness that causes them to be admitted to the intensive care unit (ICU) develop post-traumatic stress disorder (PTSD). Furthermore, “the impact of hospitalization can linger with children long after their discharge,” which causes even greater anxiety for children with terminal illnesses who are constantly in and out of hospitals (Maps). But, children are not the only ones coping with stress reactions; parents are also struggling.

Parents feel helpless watching their child in excruciating pain, unable to help them, with recurring hospital stays, parents and children fear what will happen next, ultimately fearing death. Thankfully, many programs help children feel less isolated from their community. InvisiYouth allows teens and young adults worldwide struggling with chronic illnesses with lifestyle programs, empowering and supporting them through fun activities. Virtually, Band-Aides and Blackboards help children interact with others in a similar situation. Additionally, there are many programs to help parents cope with stress reactions. The National Child Traumatic Stress Network (NCTSN) and After The Injury helps parents understand their child’s responses to an illness and advise how to react and help their child. CopingSpace provides information to help parents cope and understand their child’s condition (“Coping with Stress Reactions after Injury or Illness”).

Over the summer, I started volunteering at Spreading Sunshine, a non-profit which focuses on bringing joy to terminally ill kids and their families. The organization has an outsized positive impact with a micro-sized budget: it provides impaired, isolated, suffering kids with attention, concern, and a little fun. Spreading Sunshine also significantly impacts parents of children with chronic illnesses. For example, Spreading Sunshine created a Facebook group for all mothers of children with terminal illnesses, which allows these mothers to ask questions and make friends with women in similar situations. This platform will enable families of children with terminal diseases, isolated from their community at home, to become part of a new community, which is everything for these families (“Family Care”). Families of children with chronic illnesses ultimately need love and support, as they are facing their biggest fear: uncertainty about their child’s future.

The world’s pediatric population, twenty years or younger, accounts for 35% of the overall population. Twenty-one million of these children are in desperate need of palliative care. Palliative care is specialized medical care for people living with life-limiting conditions or chronic illnesses. This intensive treatment is used to ease pain, manage the condition, or even cure the disease completely (“Scale of the Need”). There are 2.5 million children who die worldwide, and 98% of them live in low-tomiddle-income countries. Moreover, there is an uneven distribution of the burden of palliative care, especially in Europe. Around 170,000 children with health-related suffering will die every year in Europe alone without access to palliative care (AriasCasais). Children with terminal illnesses are isolated, deprived of having a “normal” childhood, and constantly in excruciating pain; some organizations strive to make that pain a little easier.

While researching isolation for terminally ill children and their families, the ICPCN mission particularly stood out. The International Children’s Palliative Care Network (ICPCN) has a mission to achieve the best quality of life and care for children and young people with life-limiting conditions. While raising awareness for children with terminal illnesses, ICPCN stated that “[e]ach year in the United States, approximately 500,000 children cope with life-threatening conditions, and 53,000 children die from trauma, lethal congenital conditions, extreme prematurity, heritable disorders, or acquired illness (“Scale of the Need”).” These strong individuals live their day-to-day lives in an immense amount of pain, isolated from the outside world. Over twenty million terminally ill children worldwide are not provided with the proper care due to their countries’ negligence. But, ICPCN believes that palliative care services could be a life-changer for these terminally ill children and their families. Unfortunately, there are considerable barriers to developing children’s palliative care services as “[i]n some countries healthcare professionals never acknowledge death in children. The cultural denial of the fact that children die prohibits the development of children’s palliative care services.” These isolated, suffering children are dying because of their countries limited resources and lack of trained personnel to produce the palliative care. Many nations worldwide have limited access to pain-relieving medications, therefore, causing terminally ill children to constantly be in excruciating pain (“Scale of the Need”). Children living in low to middle-income countries are less likely to access palliative care. According to Science Direct, “[a]approximately 170,000 children in need of palliative care die every year in Europe without access to it.” In Europe, a study was conducted to see how many countries had the accessibility to have palliative care. Even though palliative care provision is flourishing worldwide, some low to middle-income countries cannot afford palliative care at all. A ScienceDirect study suggests that an estimated “65.5% of countries globally have no palliative care provision, with only 5.7% reaching mainstream providers (Arias-Casais)”. The lack of palliative care causes children extreme pain, a gruesome devastating phenomenon for parents and families to face. No child should ever be deprived of proper medication and live in constant pain.

Parents and families have been forced to make difficult decisions regarding their children’s health due to the lack of new medication and technology in some countries. “The taboo around child death, without an open and honest approach in dealing with death and without adequate children’s palliative care options, means that families are often forced to make inappropriate and ill-informed decisions to attempt aggressive curative treatments.” Nevertheless, ICPCN informs families that there is another way. Life-prolonging care and palliative care can go hand-in-hand. Palliative care was given the reputation that it should only be considered when all other options are exhausted, but that is entirely not true. For many terminally ill children, palliative care significantly improves their lives (“Scale of the Need”).

Ryan, a five-year-old boy born with a rare genetic disorder, can live sufficiently due to his pediatric palliative care. In the first six months of his life, Ryan’s continued seizures, surgeries, and sleepless nights due to respiratory issues required him to be a frequent patient in the hospital. Mother Meghan explains to Get Palliative Care that “I spent so much time on the phone dealing with insurance companies and coordinating doctor’s appointments that I wasn’t able to spend quality time with my newborn.” With mother, Meagan, and father, Dan, distraught and needing a solution to help their son, social media research led them to a specialty that allows children and their families to deal with all aspects of serious illnesses. Not only did the palliative care specialists help relieve some of Ryan’s pain, but the team also supported the family every step of the way. With both parents working full time, they could not be at the hospital frequently; therefore, the palliative care specialists installed medical equipment in their home and came to visit Ryan at home often to check on his progress. Mother Meghan explains that “[t]he training and care coordination made an enormous difference. Being able to care for Ryan at home has given us more time and energy to enjoy quality time with him.” As a result, Ryan is now able to spend more time with his family, in less pain, and his family believes “with full confidence that palliative care has made all of the difference in Ryan’s life and in our lives (“Living Well with Serious Illness…”).”

Spreading Sunshine serves a significant void by being a community for families of children with chronic illnesses, some of whom have children undergoing palliative care, allowing families to feel supported and loved. During my research, I found a similar non-profit organization that has a considerable impact on the lives of terminally ill children and their families. Miracles For Kids is one of the only organizations on the West Coast that help chronically ill children be less isolated from their community. Their mission is to “provide monthly financial aid, subsidizing housing, and counseling to families fighting for their child’s life.” Miracles For Kids has helped over one thousand five hundred families from thirteen different countries worldwide. Children have been diagnosed with over one hundred and thirty unique, terminal illnesses among these families. In addition, Miracles For Kids raises money to help families with food, clothing, shelter, etc., to allow families to focus on caring for their terminally ill children (“Families We’ve Helped”).

Organizations like Miracles For Kids and Spreading Sunshine allow families to focus on their children and have a community that supports them, which ultimately is one of the essential features that every family needs. These organizations believe that “families fighting for their children’s lives shouldn’t have to worry about becoming homeless or going hungry,” and therefore provide these amenities to the families while also building a friendship. Unfortunately, parents of children with terminal illnesses are so busy taking care of their children that they get isolated from their community (“Families We’ve Helped”). Spreading Sunshine and Miracles For Kids strive to provide support and love for these parents. The community Spreading Sunshine builds through their personal letters, Facebook groups, one-on-one in-person interactions, and personalized “sunshine boxes” causes families to be less isolated, therefore, significantly improving their mental health. Additionally, the National Library of Medicine draws on how parents are affected by having children with chronic illnesses. Dr. Cohn found that “[p]arents of chronically ill children experience poorer mental health (more anxiety and depression), and mothers of those with congenital anomalies may have a greater risk of cardiovascular disease and mortality than parents of unaffected children (Cohn).” Thankfully, non-profit organizations like Spreading Sunshine and Miracles For Kids acknowledge parents’ poor mental health and support them every step of the way through one-on-one interactions.

Support, love, attention, and care are what families of children with terminal illnesses need the most. Miracles For Kids saved Ja’Nae and her single mother. This family of two soon became homeless after Ja’Nae was diagnosed with a critical heart defect, as Ja’Nae’s mother stopped working to focus all of her attention on Ja’Nae and her care. As a result, Ja’Nae and her mother felt alone, hopping from place to place, unable to have a stable home, until they found Miracles For Kids. Miracles For Kids took Ja’Nae and her mother in and provided them with stable housing, care, and friendship. This sense of community and stability allowed Ja’Nae’s mother to focus on getting back to work (“Families We’ve Helped”). Additionally, Spreading Sunshine made a considerable difference in Michah’s family. Micah was diagnosed with cancer and had to move to Memphis to get the best care possible. Micah and his family were struggling. Heather, Micah’s mother, explained that “Things are HARD. No money, no community, no school, no church, no friends, but Spreading Sunshine makes me feel loved.” Spreading Sunshine, with donations and the hard work of volunteers, provided meals, Sunshine Boxes, and special projects to encourage each family member. Spreading Sunshine gave Micah and his family a sense of community, a “[v]ery loved in a lonely place.…My deepest thank you for loving us so deeply,” explains Micah’s mother (“Family Care”). Miracles For Kids and Spreading Sunshine both allow families like Ja’Nae and Micah’s to find a sense of community and stability through love, care, support, and friendship.

As a result of the ongoing global pandemic, families’ needs have never been more robust. With volunteer numbers and resources greatly diminished and, due to health reasons, the halt of many programs in-person one-on-one interactions causes many families to be isolated. Never has it been more essential to encourage society to step forward and care for the most vulnerable and isolated people in our society. These families just need a little love and support, as they have so much to worry about in their day-to-day lives that they lack much human interaction. The world, America especially, must come together to help create a community for the vulnerable, isolated populations.

WORKS CITED Arias-Casais, Natalia. “Mapping Pediatric Palliative Care Development in the WHO-European Region: Children Living in Low-to-Middle-Income Countries Are Less Likely to Access It.” ScienceDirect, Elsevier, 24 Apr. 2020, www.sciencedirect.com/ science/article/pii/S0885392420302499. Accessed 4 Feb. 2022. Cohn, Liel N. “Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis.” National Library of Medicine, 6 Jan. 2020, pubmed. ncbi.nlm.nih.gov/31916997/#:~:text=Conclusions%3A%20Parents%20 of%20chronically%20ill,than%20parents%20of%20unaffected%20 children. Accessed 4 Feb. 2022. “Coping with Stress Reactions after Injury or Illness.” Health Care Toolbox, www. healthcaretoolbox.org/coping-stress-reactions-after-injury-illness. Accessed 4 Feb. 2022. “Families We’ve Helped.” Miracles for Kids, 2022, miraclesforkids.org/. Accessed 4 Feb. 2022. “Family Care.” Spreading Sunshine, 2022, spreading-sunshine.org/family-care/. Accessed 4 Feb. 2022. “Living Well with Serious Illness: Ryan’s Pediatric Palliative Care Story.” Get Palliative Care, 13 Jan. 2020, getpalliativecare.org/living-well-with-serious-illness-ryans-pediatricpalliative-care-story/. Accessed 4 Feb. 2022. Maps, Justin Kenardy. “Kids Can Be Traumatised by Hospital Stays, Research Shows.” Psychlopaedia, 6 June 2016, psychlopaedia.org/health/kids-can-be-traumatised-byhospital-stays-research-shows/. Accessed 4 Feb. 2022. “Scale of the Need.” International Children’s Palliative Care Network, 4 Mar. 2006, www.icpcn. org/information/the-need-for-childrens-palliative-care/. Accessed 4 Feb. 2022.

Reflection

Spreading Sunshine

Over the past year, I have partnered with Spreading Sunshine, a non-profit organization based in Memphis that focuses on bringing joy to terminally ill kids and their families. The organization has an outsized positive impact with a micro-sized budget: it provides impaired, isolated, suffering kids with attention, concern, and a little fun. Spreading Sunshine partners with local hospitals and other non-profit organizations to make more personal connections with the terminally ill children in their community. In this model, Spreading Sunshine delivers care packages called “sunshine boxes” to kids and pursues one-on-one interactions with them in the hospital. COVID interfered with this model, and the effectiveness of our program was threatened. Volunteers could not have one-on-one interactions with patients in the hospital, which was heartbreaking for the patients and volunteers themselves. Gina Bartlett, Spreading Sunshines Volunteer Coordinator, and I were determined to come up with a solution to this pressing issue.

Over the summer, after countless Zoom calls, I suggested a solution. I created and successfully pitched a cost-free solution to help our organization continue to fulfill its mission: I would create individualized birthday videos for our kids, incorporating personal messages from other children. In constructing the video, over forty of my fellow Ensworth classmates sent me individualized videos for each child, enabling me to build a video containing personalized messages for each child. While I live a busy life full of sports and extracurricular activities, the time I spent putting together these videos has been the most rewarding as they have significantly impacted the children. For example, one mom explained to me that because her terminally ill daughter has been in and out of hospitals all of her life, she has not had the chance to play or spend time with other kids; therefore, she did not have many friends her age. So, when she saw the personalized video containing people who spoke directly to her, it meant the world. The lesson: the more a person is isolated, the more impactful genuine attention and care. I am forever thankful for my time with Spreading Sunshine, as I was able to impact the lives of numerous children. These children are suffering more than I probably ever will, but I was able to see their perspectives through my service. The powerful children with chronic illnesses do not want to hear sympathy; they want to be treated just like everyone else. They do not get to see and interact with people their age often; therefore, the small interactions with other children make the most significant impact. These children are just like everyone else, and they deserve the same loving attention and care that children who can go to school every day receive. When signing up to be a Service Scholar, I never thought virtually volunteering with Spreading Sunshine would leave such an impact on me. Throughout my entire experience of making birthday videos and hearing children’s stories, I learned that a bit of love and genuine care can go a long way. I will continue to volunteer at non-profit organizations like Spreading Sunshine, as I hope to continue to spread joy to people who are isolated from their community.