Ryan's Story
As the youngest of six siblings, Ryan came into the world fully loved by a big group of people. They rallied around him as he spent a couple weeks at the NICU. After a time, the doctors sent him home without a diagnosis. Some of his symptoms included seizures and scoliosis, but he tested negative for all the genetic issues doctors hypothesized.
Over time his loved ones, Ryan’s mom Tina said, didn’t need a label to know how to best care for him.
Part of that care required a durable medical equipment provider. Tina found Wave Healthcare when Ryan was about two years old. Wave provided his formula and then later helped with pulmonary needs. Tina called her random DME selection a “huge blessing.”
“The entire healthcare team has always been so helpful making it easier to take care of Ryan.”
Ryan didn’t have a diagnosis until after he turned 15 years old. Eventually doctors repeated a test that showed Ryan has Pallister-Killian Syndrome, a rare genetic disorder. The diagnosis was the perfect fit for Ryan’s symptoms. While it didn’t give them any new information, Tina said it offered a possible prognosis and a community.
“[The diagnosis] is nice to have, it gives us a community of people, and it gave us a label… but at this point we’ve come to accept that he’s Ryan… We just try to help him live life to his very fullest and try to move forward with that.”
“Living life to the fullest” takes a little extra work compared to other teenagers, but the activities are similar. Tina said Ryan loves adventures and always looks forward to exploring new places. Some of his favorite outings include the Doseum, the zoo, and the botanical gardens.
“He just wants to be involved in everything,” Tina said.
And like all teenagers, he especially wants to be involved in whatever his friends are up to. He also has moments of sass, but Tina said it’s always in good fun. When Ryan’s annoyed with her, he’s started calling her “Mrs. Potato Head” through his speaking device.
This point of normalcy came after some hard times. Tina said that’s something that would have given her past self some hope early on.
“Things will start to feel normal. You will find your normal. It may be really different from what you imagined but you will find a normal, and it will be good. Every day won’t feel hard. That’s important to remember in the beginning.”
Through the good times, hard times, and mundane times, Ryan’s support group will care for him as best they can, and he will supply the adventure (and occasional sass).
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