Raising for Ryan

Our son, Ryan, was born with a rare brain disorder called Lissencephaly, which means "smooth brain". Due to a random gene mutation, the folds in Ryan's brain never developed. Lissencephaly occurs in 1 in 100,000 babies. Most children with Liss suffer from seizures and have difficulty feeding and swallowing, severe physical and mental disabilities, and poor muscle tone and control.

In the first 9 months of his life, Ryan has gone through 4 surgeries and multiple hospital stays. He takes multiple medications daily to control his seizures and reflux. He can no longer eat orally due to aspiration, so he has had a feeding tube since he was 3 months old. Ryan is regularly followed by many specialist and gets weekly physical therapy, occupational therapy, and bi-weekly vision therapy. 

In honor of Ryan's first birthday we are having a beef and beer fundraiser to raise money for rare brain disorder research. All of the proceeds of the fundraiser and any donations through this gofundme will be donated to rare brain disorder research through the National Organization of Rare Disorders (NORD). Ryan is, hands down, the bravest person we've ever met. We celebrate every bit of progress he makes, no matter how small. Please help us raise awareness for not only our little warrior, but for the 30 million Americans struggling with a rare disorder.


Kirsten Hurley
Warminster Township, PA

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