Published: Dec 12, 2018
Infantile Spasms (IS) is a very rare, serious seizure disorder that affects young children. Annually, only about 1,200 children are diagnosed with IS in the United States. (Child Neurology Foundation, n.d.).
20-month-old Bryson Townes was admitted to Nemours/Alfred I. duPont Hospital for Children for an extended stay due to IS. Doctors also diagnosed Bryson with Ohtahara Syndrome, another neurological seizure disorder, and Leigh Sydrome, which is characterized by progressive loss of mental and movement abilities. With a scary list of medical conditions, Bryson and his family faced a long journey to come.
Bryson’s mom Nicole was well into her pregnancy with her second son (Joshua, now 8 months old), when she spent her nights sleeping in Bryson’s hospital room. AfterJoshua was born, a nurse mentioned the Ronald McDonald House of Delaware, and the family was relieved to find a respite from sleepless nights on hospital sofas.
With two older daughters, Taylor and Alexis, their newborn, Joshua, and two parents, Nicole and Steven, the entire Townes family found a place where all members of the family could be together: right across the street from the hospital at the Ronald McDonald House of Delaware. The family has stayed at the House twice, for a combined total of 162 nights.
The family’s most impactful moment at the House was the first time they came to dinner in the dining room. Having usually returned late from the hospital, the Townes family always missed 5:30 dinner time, but happened to make it back on this particular night. They were pleasantly surprised to find a “communal feel, a family” gathered in the dining room, sharing a meal. They found a sense of relief and say it felt normal, like being at home with their extended family. On this night, they decided to begin coming to dinner at the House regularly, because “it felt like home.”
Nicole and Steven say that in addition to “gaining a large, extended family,” they learned about and from other families’ experiences. Nicole says that Taylor and Alexis made friends with a lot of the other kids at the House, and were surprised that some of their new friends were actually patients. “It helped them learn that children with chronic illnesses are ‘just like them.’ It has taught them compassion and empathy.”
When summarizing their stay at the Ronald McDonald House of Delaware, Bryson’s mom and dad said, “[The House] provides a sense of home where you don’t feel judged or feel like you’re in a hospital. There is good food, and a place to shower and sleep. We don’t have to drive back and forth. So we can all be together.”
The Townes family is looking forward to Bryson’s discharge from the hospital so he can go home, where he is more comfortable, and are hoping for fewer hospital stays. They also mention that they hope for a future where “every children’s hospital has a Ronald McDonald House available for families.
Child Neurology Foundation. (n.d.). Infantile Spasms. Retrieved from
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