Children's Hospital of Philadelphia is the only place in the country doing any sort of research on this disorder, and he's enrolled there in an investigational drug treatment.
He needs to fly to Philly every 3 months to continue treatments, which we are hoping will extend his quantity of life and improve the quality of it. Right now his life expectancy is 3 years, but we want more time with our baby boy!
Funds will be used for transportation and housing while undergoing treatment. We are a one-income household now, as mom had to quit her job to become sole caretaker, and unfortunately we live too far away to qualify for flight assistance programs.
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