My 2 yr. old son has Koolen De Vries Syndrome and had multiple life saving surgeries before turning 1. He is a miracle and a true joy!
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Tommy is a sweet and happy little boy. He is mostly non verbal and often communicates with clapping and some sounds. He is almost always happy and is a constant source of joy in our house. Tommy spent most of the first year of his life in the hospital and is truly a little warrior. After having part of his right lung removed at 3 weeks old and open heart surgery at 8 weeks old, Tommy has fought so hard to be here today and he continues to exceed the expectations of his medical team!
What are Tommy O'Griallais's favorite activities?Tommy loves Miss Rachel and Sesame Street. He loves music and watching his older sister dance around the house. Tommy has just started to use AFO braces and Stander at home and seems to enjoy the change in position and working on strengthening his legs. We are hopeful that one day Tommy will take his first steps!
How would $25,000 impact your family?Tommy’s rare syndrome as led to a number of medical issues including chronic lung disease, low muscle tone, developmental delays, feeding issues resulting in a feeding tube and more. He requires 24 hour care which means we are a one income household. Winning the $25,000 would be life changing for our family as it would allow us to seek out private therapies for him as well as cover the cost of his mobility devices. This money would help us give Tommy the best help possible to grow and thrive!
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