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The boys, Ryan, Ethan and Jack McCormack Caulfield.

Irish community in New York rally to help brothers with rare genetic disorders ALD

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The boys, Ryan, Ethan and Jack McCormack Caulfield.

A trans-Atlantic Irish family is dealing with the cruel realization that two of their three young boys are suffering from a rare genetic illness that could take their lives if sustained medical steps aren’t taken to stem the spread of the disease.

Little Ryan McCormack Caulfield, seven, and his brother Ethan, four, were diagnosed with the genetic disorder ALD in August of last year. The hereditary disease is a progressive, degenerative disorder that over time prevents the nervous system from functioning, leading to severe neurological deterioration.

The boys are the children of Jimmy Caulfield of Yonkers and his wife Caroline McCormack Caulfield, who spends part of the year in her native Tramore, Co. Waterford with the children. Ryan has a twin brother, Jack, who tested negative for ALD.

This Saturday, February 16, in an effort to defray the millions of dollars in medical bills the family expects to incur for transplants, physical therapy and other treatments, the Rambling House on Katonah Avenue in Woodlawn is hosting a fundraiser that will feature live music and an array of raffles and auctions. The event kicks off at 3 p.m., and supporters are hopeful that the helping hand will provide much needed moral and financial support to the family in the critical months ahead.

“We are so grateful for all the support from the Irish American community,” Jimmy Caulfield told the Irish Voice on Tuesday from a hospital in Minnesota, where he and his wife are tending to Ethan, who had a umbilical cord transplant in December.

“We couldn’t wait for a match for a bone marrow transplant, so we had to have an umbilical one,” added Caulfield, who is employed as a custodian/engineer at PS 19 on Katonah Avenue in Woodlawn.

Ryan and Jack were born in 2006, and their younger brother Ethan, known as Big E, came along two years later. Caroline noticed that something was amiss in Ryan last August and took him for immediate care in Tramore.

“I wasn’t at all sure what was wrong but I was very concerned. He had become a little clumsy and his attention span seemed a bit short,” Caroline writes on the boys’ Facebook page, Save Ryan and Ethan Appeal.

A team of physicians did a battery of tests on young Ryan, all of which came back clear. His mother, however, sensing that something was definitely not right with her child, took him to Dublin for an MRI.

Doctors soon delivered shattering news – Ryan had ALD.  The family was advised that the two other boys could also be carriers, even though the chances were slim, one in two million.

Reeling from the news, the Caulfields tested Jack and Ethan for the disease, and the sickening result was that Ethan also has ALD.

The family is attending the University of Minnesota Amplatz Children’s Hospital for treatment for the boys, one of the few hospitals in the country that has the medical personnel to deal with the rare disease.  Ryan’s procedure in December was a success, but the long-term outlook is unclear.

“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.

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