Ojai Valley News Blog

Friday, August 17, 2012
By Misty Volaski

Until February, Jake Larkin was an average 5-year-old. But one day, his dad, Bob, and sister, Catie Jo, noticed there was something wrong with the youngest member of the family. “Bob called Kimberly (Jake’s mom) and said that he’s got no energy and he’s covered in bruises,” recalls grandmother and Ojai resident Sheila Cluff. “They decided to take him in to the doctor.”

A short time later, the family received the frightening, life-altering diagnosis: Jake had severe aplastic anemia. According to the family’s website www.matchjake.org, “For reasons currently unknown, Jake’s bone marrow has stopped working — which means that it is not producing red or white blood cells or platelets.”

Treatment had to begin immediately, and the family moved from their Northern California home to Milwaukee so Jake could be close to doctors specializing in his condition.

Now 6, Jake “has about six drugs he has to take, and goes in for four to nine hours for a blood transfusion,” said Cluff. “Once he gets his blood transfusion, he acts like a normal 6-year-old. He said to me the other day, ‘Grandma, I have to go in for a tank of fuel!’”

But the boy’s immune system is greatly compromised by his condition; serious infections are a constant threat, so he must wear a mask anytime he goes outdoors.

And, as time goes by, “there’s a diminishing return” on his treatments, Cluff said. “From what I understand, if we don’t get a match by Sept. 15,  then there are some not-so-good options” to keep Jake alive.

The best option? To find a bone marrow donor for Jake before the Sept. 15 deadline. The Larkin and Cluff families have set up two testing dates: Aug. 25 from 10 a.m. to 2 p.m., at Oxnard’s Channel Islands Ice Center (where Cluff ice skates), 830 Wagon Wheel Road. The other testing will be Aug. 29 from 11 a.m. to 4 p.m. at Ojai’s Rainbow Bridge, 211 E. Matilija St. Donations can also be made at either testing day.

Any healthy individual between 18 and 60 can take the test, which is quick and painless, says Jill Kendall-Erb, Be the Match program director for City of Hope. “They will then be given a swab kit which consists of four mouth sways (which look like long Q-tips),” Kendall-Erd said. “The donor gently swirls each swab in his or her mouth to collect a cell sample which will later be tested and added to Be the Match Registry.”

If a match is found for anyone on the international registry — not just Jake — they’ll be asked to take a blood test and physical exam. If there’s a match, according to Kendall-Erb, the marrow can be withdrawn from the back of the donor’s pelvic bone through special hollow needles. This is the preferred procedure, although it does usually require general anesthesia and a few days to recuperate. The other way is through peripheral blood cell donation, which does not require anesthesia.

Although there is some risk for anyone undergoing general anesthesia, Kendall-Erb emphasizes that over 98.5 percent of donors “feel completely recovered within a few weeks.” All costs for the donor are covered by the Be the Match Registry.

“Finding bone marrow matches is like finding a needle in a haystack,” sighed Cluff. “But he’s been such a soldier through all of this.”

For the founder of The Oaks at Ojai — who has dedicated her life to fitness and good health — her grandson’s condition is particularly difficult to swallow. It is “very frustrating. You go back to the history of our families, and there’s no genetic background. The whole family is vegetarians, and this little guy was very active — it’s not a questions of poor nutrition or poor health. There’s no explanation.”

Log on to www.MatchJake.org for more information and to follow Jake’s progress.