Irish community in New York rally to help brothers with rare genetic disorders ALD
Fundraiser being hosted for two young brave boys
“He’s such a trooper, but it’s going to be a tough road,” his proud father says. “He’ll have long-term effects for sure, like developmental problems and memory problems. Other than that we just don’t know.”
Ethan is arriving in Minnesota next week for further testing. There’s a glimmer of good news as far as his current state of health – an MRI showed a lack of white matter in his body that’s normally associated with ALD. However, the boy is far from out of the woods.
“It could dormant for a while in Big E,” Jimmy says. “But unfortunately, there’s a good chance that when he’s in his twenties it could become active, or it could be sooner. We don’t know and doctors don’t know.”
The family has clocked up thousands of miles traveling from Ireland, New York and Minnesota. “Yes, I know all those routes like the back of my hand,” Jimmy says, not to mention the many days he’s had to take off from work to support his children.
Ryan’s procedure has already totaled more than $1 million, and while the family has some insurance, it doesn’t cover all costs. Should Ethan also require treatment, the medical bills, says Jimmy, will be staggering.
“It’s not even something we can wrap our heads around or even think of,” he adds.
“We have great friends and family. Ireland has really stepped up with the fundraising for us, and Waterford Crystal even created a once off piece for an auction for the boys. And the Cartys at the Rambling House have been unbelievable to us. We can’t thank everyone enough.”
The Rambling House is located at 4292 Katonah Avenue in Woodlawn, phone 718-798-4510. The fundraiser on Saturday starts at 3 p.m. and goes throughout the day and night. Live music will come from Jameson’s Revenge, Dermot Henry, Peter McKiernan, Sean Ruane, Head Rush and more. Raffles and auctions will also be available.
For more information on the boys, visit www.saveryanandethan.com.
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