P’ville Family Turns to Fundraising Effort to Help Young Daughter
It’s never easy asking for help, but spiraling medical, therapy and home renovation costs left one Pleasantville family seeking help to make life as comfortable as possible for their four-year-old daughter.
With nowhere else to turn, Chris and Dianna Ryan created a GoFundMe account in an effort to buy a wheelchair accessible van and renovate their home for their handicapped daughter, Emma.
Hundreds of donors, some local, others anonymous, have answered the call since the drive started earlier this month. With a $160,000 goal, 792 people have donated $108,676 through Nov. 26.
“It’s been overwhelming to say the least. There are a lot of names we don’t even recognize,” Chris Ryan said. “We have a lot of very helpful friends and family and they got the word out significantly.”
Despite what Dianna described as a “relatively easy pregnancy,” Emma was intubated and rushed to Lenox Hill Hospital’s neonatal intensive care unit when she couldn’t breath spontaneously at birth. After a month, she was moved to St. Mary’s Children’s Hospital in Queens where doctors realized Emma had several developmental delays and disorders.
When Chris and Dianna brought their daughter home, they, with help from family, managed the regular visits to nine different doctors while juggling physical, occupational and feeding therapy with early intervention and private therapists.
Despite improvement, Emma began having seizures at five months old, which negated any progress that she had made. Her seizures were diagnosed as Infantile Spasms, a rare disorder that is difficult for parents and pediatricians to spot due to symptoms that are uncharacteristic of a seizure.
Those episodes have left Emma legally blind, fed primarily through a gastrostomy tube in her stomach and functioning at the level of a three-month-old, her parents said.
“She hasn’t recovered from the seizures, unfortunately,” said Chris, adding that Emma can’t talk, sit up, crawl or reach. “She was able to do more at three or four months of age than she’s able to do now because of her seizures and her condition.”
Emma was also diagnosed with Ogden Syndrome, a rare genetic mutation disorder that causes developmental delays, intellectual disability, facial malformations and weak muscle tone throughout the body.
While the disease generally affects boys, Emma is among only 22 known Ogden Syndrome cases in girls worldwide, Dianna said.
Two years ago, the Ryans moved to Pleasantville from Queens so Emma could attend Blythedale Children’s Hospital, which brought all of her therapy into one place.
“We like that in Westchester the population of people like Emma is a little bit smaller so there’s a little bit more focus,” Dianna said. “And there wasn’t anything like that in Queens.”
As Emma grows, her doting parents admit they need help if they want to make their daughter’s life more comfortable. Chris, a New York City firefighter, and Dianna, a buyer, both said it was a difficult decision to publicly ask for financial support.
“It’s kind of difficult to admit, financially asking people for help. It’s embarrassing,” Chris said. “It’s humbling and at the same time it’s admitting what Emma needs and that’s not going to change. It’s not going to get any easier.”
“When I couldn’t lift her anymore I knew we needed to change,” Dianna said. “Up until that point we treated her like a baby picking her up and moving her, but she’s dead weight. Getting her in and out of the car is almost impossible at this point. We can do it, but it’s a struggle and I think that’s sort of where we said it’s unsafe and we need to make changes.”
With a ranch-style home, Chris said he wants to modify his walkout basement in order to accommodate Emma’s hospital type-bed, install a ceiling lift and track system and a roll-in wheelchair shower. The money raised will also go toward a wheelchair accessible van.
“The van right now is paramount,” Chris said. “It would make life easier to get around.”
With the family steadily moving toward their fundraising goal, Chris and Dianna want to find a way to thank every donor personally for their generosity.
“People asked us, and there wasn’t anything anybody could do to help us, and now there is something that people can do,” Dianna said. “We are really grateful. It’s really nice, it’s amazing.”
To donate, visit www.gofundme.com/Van4Emma.
