A local grandmother is encouraging lakecity residents to sign up for the bone marrow registry after her grandson was diagnosed with a rare life-threatening bone marrow disease.
Debra Palin is a nurse by trade, and that comes through in the clarity she provides when describing her grandson Luke McLetchie’s disease: acquired aplastic anemia (AAA). It’s a disease that affects only two in one million children in North America every year.
“When you have aplastic anemia it means your bone marrow isn’t producing any red blood cells, no white blood cells and no platelets,” she said.
“Because he isn’t producing any platelets he’s at risk for hemorrhage, so that means he can’t go to the playground, he can’t ride his bike, he can’t do any kind of sports that you could possibly fall down.
“Then, because he doesn’t have any white blood cells that means that he can’t go to daycare because he would be exposed to kids that have germs, because if he does pick up an infection, he doesn’t have any way of fighting it.
“And then, because he doesn’t have very many red blood cells he just doesn’t have the energy.”
For an active four-year-old with a healthy twin as well as an older brother, it means he can’t do many of the same activities that the children around him can.
Luke’s mother, Jodee McLetchie, was born and raised in Williams Lake, and Debra and her husband continue to make their home here.
At the moment, Palin is making trips back and forth to Vancouver to help her daughter and grandchildren through Luke’s treatment.
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The best treatment for aplastic anemia is a bone marrow transplant. Statistically, with a 100 per cent donor match, there is a 90 per cent cure rate, said Palin.
Unfortunately, everyone in Luke’s family, including his twin brother — who is a fraternal twin, not an identical twin — is only a 50 per cent match. While a transplant at that match is doable, it’s not the best option for the four-year-old, which is why they’ll have to rely on the donor registry, which can pull matches from around the world.
Registering to be a bone marrow donor is relatively simple. You have to be between the age of 17 and 35, and meet certain health criteria. After registering and filling out a questionnaire online via the Canadian Blood Services, they’ll send you a buccal swab kit, a kit you simply use to swab the inside of your cheek and mail it back. For more information, check out https://blood.ca/en/onematchhowto.
Until that happens, Luke is being treated using immunosuppressant therapy, as well as blood and platelet transplants. About 67 per cent of children respond to that therapy, but there’s also a chance of relapse in that case.
The risk, said Palin, is not necessarily the aplastic anemia itself. It’s the conditions it creates in the body.
“Kids don’t die of aplastic anemia. They die of either a hemorrhage or an overwhelming infection. So, if they can keep him from an infection, and they can buy time with platelet and blood transfusions.”
Palin said the B.C. Children’s Hospital has been amazing for Luke, but it’s still tough on the family. Jodee, who has shared custody of the three children, has had to take a leave of absence from her job to take care of Luke, so Palin has set up a GoFundMe page to help with extra costs.
Luke is doing as well as can be expected, said Palin. He’s good during visiting the hospital, but he doesn’t understand why he can’t play and do the same things his brothers can.
As for Palin and Jodee, “You have your ups and downs, but we are very, very optimistic,” said Palin.
That’s why she hopes more people will register to the bone marrow match, or, failing that, donate blood.
“If more people register, the chances of them being a match for Luke are higher, but even if they aren’t a match, the more people in the registry, the more people can be helped.”