Irish Americans Kimberly Cluff and Bob Larkin had their lives turned upside down in February when their youngest child, Jake, was diagnosed with Severe Aplastic Anemia. Jake’s parents, family and friends are now on the hunt for a bone marrow donor, in particular of Irish descent, for five-and-a-half-year old Jake who has two older siblings.
“We had a normal life before this, and now it’s just about adapting,” says Cluff about the “new normal” she and her family are adjusting to. Their “new normal” includes homeschooling the all but homebound young Jake, and juggling schedules to help everyone adjust smoothly to their new lifestyle.
For instance, little Jake can’t venture outside too much for risk of infection. Kimberly says how she and Jake have gone on only about four walks in the past four months, and usually head to Jake’s favorite pie shop to get a slice of apple strawberry pie. The two are now learning how to bake the pies together at home.
Kimberly and Bob noticed something was wrong with Jake earlier this year when he was getting frequent nosebleeds and was bruising easily. One day when walking to school, Jake said to his parents that he was just too tired to go on. Kimberly and Bob knew something was wrong.
Jake was then diagnosed with Severe Aplastic Anemia. Kimberly explained how the doctors aren’t positive how he got it, but believe it may be traced back to a “touch of the flu” the whole family had in December.
Severe Aplastic Anemia is an autoimmune disease that causes Jake’s bone marrow to stop working. It is very, very rare as only 3 in 1 million Americans are diagnosed with it every year.
Kimberly explains how Jake’s body isn’t making a lot of blood, and has thus had several blood transfusions. She said that each transfusion, which provides Jake with a few pints of blood, takes about 6-8 hours in the hospital. This, she adds, is only a temporary fix as the body can only take so much transfused blood.
The hunt is now on to find Jake a suitable match for a bone marrow donation. Jake’s parents are searching within the Irish community, both here and abroad, to find a match, as most of Jake’s genetic makeup is Irish and his doctors believe the best shot at finding a match would be within that genetic pool.
To both Kimberly and Bob’s surprise, doctors discovered that the couple shared a very distant relative in Ireland many, many generations ago, causing the playful couple to refer to each other jokingly as “cuz.” Jake’s Irish heritage is plenty. His grandfather’s family are from Wexford and Cobh, Co Cork while his grandmother’s family are traced to Tyrone and Cookstown in Northern Ireland.
Kimberly said how they have already searched the donor registry in Ireland, which Kimberly describes as “very good” and has “good matching.” She hopes that one day in the near future, it will be the social norm to have everyone’s DNA in a bank available for screening.
While it’s been an “uphill challenge to let people know how the process works” since most people are unfamiliar with the bone marrow donation experience, Kimberly and her friends and family have begun to reach to large audiences in hope of encouraging people to apply to be donors.
Anyone, anywhere is encouraged to see if they can be a donor, and can do so simply by submitting a cheek swab in the mail.
“We know the Irish community will step up, they always do,” says Kimberly. She says she and her husband refer to the search as “calling upon the tribe.”
Currently, Jake is on a medication which turns off his immune system in order “to tell bones they can start working again.” When speaking with Kimberly, Jake had been on the medication for 90 days, which is when results are expected to appear. She said the results weren’t overwhelming yet, and that they would continue the medication to see if any other improvements would occur.
While the hunt continues for a match for Jake, the almost 6 year old little boy remains “chipper and happy.” Kimberly and Bob continue to look for the small blessings and have called the entire experience “humbling.”
Jake is still looking for a bone marrow donor. Head to the MatchJake Facebook page, MatchJake.org and BeTheMatch.org to learn more about applying to be a donor and to follow updates about Jake.