Gavin is a five year old boy who has been diagnosed with a rare illness called Klippel-Trenauney Syndrome, but his doctors think there is more. He is in need of genetic testing that his insurance will not pay for. His doctors and parents need this information to determine the best course of treatment and to answer some questions about his health.
He has 11 doctors on his team, with most of them being at Riley Children's Hospital in Indianapolis. He lives three hours away and makes the trip to Riley as often as once a week and has had close to 20 procedures with 6 in the last 14 weeks.
His family has exhausted all resources for his care. This is a lifelong illness that will get worse with age. The information from this test will help determine future treatment and hopefully lengthen the time between procedures. Any funds raised above the cost of the test will be applied to his future medical care.
Gavin loves legos, science, super heroes, frogs, puzzles, and Pokémon. He is a brave little boy whose smile and dimples charm everyone he meets. Thank you for funding this sweet superhero's genetic testing!