“I wake up every day and still can’t wrap my head around it,” said Ronan’s mother Rachel. “Our lives have changed in ways we could never have imagined. But he’s such a wonderful, sweet boy – he never complains.”
Ronan has dyskeratosis conegita, a rare, inherited blood disease caused by the failure of the bone marrow to produce red and white blood cells, and platelets. The little boy needs a bone marrow transplant, and because none of his relatives are a proper match, his family is reaching out to the communities of East Contra Costa County and San Bernardino County – where Ronan lives with his parents – in the hopes of finding a donor.
“We need a miracle,” said Brentwood resident Bertie Stewart, Ronan’s grandfather. “Ronan is one of just 300 people in the world with this disease and we need to get him a donor to have a chance at survival.”
On Saturday, March 19, the bone marrow registry organization called Be The Match will host a donor registry event from 10 a.m. to 3 p.m. at Golden Hills Church, 2401 Shady Willow Lane in Brentwood. Potential donors must be between the ages of 18 and 60. No reservations are required. The process takes approximately 10 minutes and includes filling out paperwork and giving a cheek swab sample.
“Golden Hills has been kind enough to let us use one of its rooms, and anybody can just show up and help,” said Stewart. “We’re trying to get as many (swab) donations as possible. The more the better.”
If a donor is found soon, doctors are hoping to perform the bone marrow transplant as early as May. In the meantime, Ronan is undergoing weekly platelet transfusions. Because of the danger of bruising and infection, he must stop attending preschool. He’s even forgoing trips to the grocery store and outings to the movie theater.
“The hardest thing has been all the changes,” said Rachel. “Whereas normally Ronan would run around and hit his head on the counter three or four times a day or climb around in the backyard, he can’t do that anymore because of the danger of bruising. So he wears a soft helmet and we’ve put padding on the countertops and all through the house.
“But people have been so generous and kind, and I’ve been told by his specialist that Ronan has a very, very good chance of finding a match.”
Interested donors who can’t make the event on March 19 can hop online at www.marrow.org, enter the promotion code – Hope4Ronan – and fill out the online questionnaire. A cheek swab kit will be sent free of charge, including a postage pre-paid return envelope.