March 2024 Special Needs Living Magazine

The Adventures of a Little Explorer!

We are off to the Medina Public Library with Henry Youngquist

BY DEBORAH RILEY PHOTOS BY JULIAN CURET

Amidst the faint clinking of baseballs off bats and cheering crowds, on a beautiful summer day, you can find 4-year-old Henry Youngquist playing in the backyard of his Montville Township home on his special adaptive swing. Henry loves to spend time outside and explores the neighborhood while riding in his BOB stroller as his father pushes him while he runs. While he waits for the warmer weather of spring and summer, you can find Henry visiting his favorite place, the Medina Public Library. There Henry loves to sit on the big chairs of the children’s section watching the traffic go by through the giant windows.

Henry, who has SCN8A-related epilepsy, experienced his first seizure and subsequent ambulance ride and overnight hospitalization at 6-weeks-old. During that stay, doctors misdiagnosed Henry as having reflux. The Youngquists were able to capture a video of Henry’s seizure activity that they were able to show to their pediatrician who referred them to Akron Children’s Hospital where he was able to have genetic testing done to confirm the SCN8A-related diagnosis.

The first few months of life were incredibly stressful for Henry’s family. His parents took turns watching Henry around the clock for seizures.

They had set up the Pack N Play in the living room with a stopwatch so that they could time the seizures and give emergency rescue medication when necessary. Henry’s care became so intense, his grandmother came from Wisconsin and moved in with the family to assist with his round-theclock care. So many times, his seizures resulted in 911 calls with overnight stays at Akron Children’s while doctors worked to adjust his medications. Despite his regimen of multiple anti-epileptic medications, Henry still has frequent seizures. His seizures can occur multiple times per day and sometimes are prolonged or clustered.

Henry also has global developmental delays. Over this past year, Henry has learned to walk short distances independently but typically uses a jogging stroller or wheelchair to get around. He is non-verbal, so his family is working with his care team to obtain an AAC device to assist him with better communicating his wants and needs. Recently, he started a ketogenic diet for epilepsy and utilizes a G-tube for his medications, which he receives four times a day.

Learning about Henry’s diagnosis in March of 2020 was a time of uncertainty. His SCN8A mutation was “De Novo”, meaning that the mutation was not inherited from his parents. Michelle, his mom, says,

“I remember googling “SCN8A” that day in the hospital and crying as I clicked and read through link upon link in the search results. That day, I sent an email to The Cute Syndrome Foundation, and that same day, I received a compassionate follow-up reply from Shelley from the Cute Syndrome Foundation. I joined a Facebook support group for families of children diagnosed with SCN8A related epilepsy that same day. That Facebook support group has become a lifeline of support for our family.”

The Youngquist family is so grateful for the support of their extended family (Steve and Kathy Kornder, Nicole Kornder and Don Olsen, Lowell and Judy Youngquist, Alex, and Lexi Youngquist), his amazing care team at Akron Children’s Hospital, Cincinnati Children’s Hospital as well as his pediatrician Dr. Roach, his teachers, nurses, and therapists at Helping Hands Preschool. Michelle says, “We are forever grateful for everyone who is a part of Henry’s team.”

Despite the challenges he faces with his epilepsy, Henry is an active little boy! He loves his trips to the Medina Public Library, playing at Mugrage Park, and going on adventures with his little brother, Charlie, with the organization “A Kid Again” which organizes “adventures” that the whole family can go on! He also loves his Baby Einstein light-up piano and his gumball machine. With Henry’s loving family and caring support team, we can be sure that we will continue to see him grow from the adorable little boy he is into a thriving young man.

For more information on The Cute Syndrome Foundation, you can visit: https://www.thecutesyndrome.com/ For more information on A Kid Again, you can visit: https://akidagain.org/ chapter/northern-ohio-chapter/

Special thank you to Henry’s favorite place the Medina Public Library for letting us use their location for our photoshoot!