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Firefighter in need

November 18 @ 8:00 am - November 25 @ 5:00 pm

FDNY Firefighter Chris Ryan of Ladder 146 and his wife Dianna are raising money to buy a wheelchair van and to modify their home for their daughter, Emma Grace.

Emma is 4 years old. She did not breathe spontaneously at birth and spent the first month of her life in the NICU.

She has Ogden Syndrome, an extremely rare and serious illness. Emma is one of only 22 girls who suffers from it. She has myoclonic seizures,  is legally blind, is fed primarily through a gastrostomy tube in her stomach, and her abilities are roughly those of a typical three-month-old. Emma cannot talk, sit up, crawl, or reach.

Both Chris and Dianna work full-time, Chris as a firefighter and Dianna as a buyer, while sharing caregiving responsibilities. Chris had to pass up a promotion to lieutenant because Emma’s life was so unstable. The family has consulted with doctors in New York, Philadelphia, Los Angeles, and Germany while looking for ways to improve Emma’s care and life.

Emma has a healthy five-month-old sister.

The Ryans bought a ranch style house hoping to only need to make minor modifications to a few doorways and to install some ramps and to avoid the need for an in-home lift for Emma’s wheelchair. They have learned that their walkout basement has the best layout for Emma to have a bedroom that will accommodate her hospital-type bed, a ceiling lift and track system for the day she becomes too big to be safely picked up, and the space for a roll-in wheelchair shower. The family has been told that the safest way for Emma to travel is in a wheelchair van. They need to buy a van by the end of the year because Emma has just about outgrown her car seat.

The cost of these items is truly staggering and outside of the purview of insurance. A fundraising page has been established for the Ryans here.

Details

Start:
November 18 @ 8:00 am
End:
November 25 @ 5:00 pm
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