Helping children during a difficult time in their lives. That’s what USIA Angels is all about. In this post, we have the very special distinction of making the acquaintance of a remarkable little girl named Sophie Abernathy. We could tell you her story, but that job is best accomplished by Sophie’s dad, Jason…
We knew something was off when Sophie was about 6 months old. She hadn’t rolled over yet and could barely lift her head. She couldn’t even sit up until about 9 months old. When she did, we started to notice she would slump in one direction. It was around this time that her pediatrician diagnosed her with muscle hypotonia, or low muscle tone (the amount of tension or resistance to stretch in a muscle). After all the really bad stuff was eliminated (spinabifida, MS, etc.), it was found that she had a rare genetic mutation called 16p11.2 chromosomal deletion that caused the hypotonia. We started physical therapy (among other additional therapies) right away, but around 12 months old, she was diagnosed with progressive infantile scoliosis. At about 13 months old she was put in a Risser/Mehta cast that covered most of her torso from the hips to below the armpits. Funny as it sounds, I think getting the cast was harder on us than it was on her. She just accepted it and didn’t let it slow her down, but my wife and I knew she absolutely loved being in the water. It was killing us because we were certain that the next few summers would be spent indoors, with the occasional break at the lake or beach in between castings.
Back in March was when I found the USIA Angels website and immediately sent an email. Everyone at USIA has been so helpful answering my questions and especially in helping me size the gaskets. Here are a few pictures of her the first time she wore the dry suit. She loved horsing around with her friends in the kiddie pool and could not get enough of sliding down the inflatable water slide and going face first into the splash-down pool.
My wife and I aren’t the only ones that appreciate the dry suit though. We used the suit again this past weekend and had it hanging in her bathroom to dry. After she was done brushing her teeth, she looked up and saw the suit hanging over the curtain rod. She excitedly pointed up to it and said “Puhpuh (purple) suit!!!” I said “Yeah! That’s your purple suit!” to which she responded by turning around with a huge grin on her face and said “I love my puhpuh suit!” To which I responded by very nearly falling over laughing. She turned off the light and walked out of the bathroom, but then she stopped in the hall, turned around and said “Good night puhpuh suit,” and blew the suit a kiss. Next to the day she was born, that suit has given us some of the happiest memories with Sophie that my wife and I can recall. We look forward to getting many more uses out of it, and we’ll be sure to send more pictures. Again, thank you from the bottom of our hearts.
Jason, Kelly, Sophie, and baby Lucas.
No need to thank us, Jason. Your beautiful words describing how much Sophie loves her suit are more than thanks enough.