When Dan and Meghan’s five-year-old son Ryan was born with a rare genetic disorder that causes severe developmental delays and many other complications—they didn’t know where to turn. Seizures, surgeries, and sleepless nights due to respiratory issues that required frequent hospital stays in the first six months of Ryan’s life took a toll on the young parents. “I spent so much time on the phone dealing with insurance companies and coordinating doctor’s appointments that I wasn’t able to spend quality time with my newborn,” says Meghan. As the number of symptoms and medical issues increased, along with traveling long distance to get to the closest hospital, Meghan and Dan began searching for extra support. Social media research led them to a specialty that helps children and their families deal with all aspects of a serious illness.
This is Ryan’s palliative care story. | 
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