Layla Sands' perfect bone marrow match has eluded her for five years.
Her mother, Jen Fuller, has organized countless bone marrow registration drives, personally placing swabs inside the mouths of hundreds of strangers.
Meanwhile Layla, 10 and a fifth grader at Charlotte Upper Elementary, hasn't been able to risk falling or catching a cold. She has severe aplastic anemia, coupled with a rare genetic condition, dyskeratosis congenita. Her body isn't producing enough new blood cells and her bone marrow is failing. She needs a bone marrow transplant, but doctors tell her family the odds of finding her match is now slim to none.
In March, a Lansing State Journal article about Layla's struggle prompted hundreds of people from all over the country to request testing kits from "Be the Match," a registry operated by the National Marrow Donor Program.
But in the eight months since, Layla's symptoms have worsened.
Now the 10-year-old Charlotte girl and her family are ready to try an alternative that could save her life.
The next best option
Layla's family first heard about haploidentical transplantation a few years ago. Without a perfect bone marrow match, the procedure is the next best option for her. It involves the transplantation of half-matched bone marrow from someone whose bone marrow aligns with hers by at least 50 percent.
Layla hadn’t been on the National Bone Marrow Registry long enough to be considered a candidate for the procedure then, Fuller said.
"They wanted to keep looking for a better match for her," Fuller said.
Now Layla qualifies for the procedure, and Fuller said they're ready to move forward with it.
Layla's platelet levels have dropped, and that's taken a toll.
"I'm noticing she's more tired," Fuller said. "She doesn't feel good a lot. She's been having chronic headaches, chronic stomach aches."
There are visual signs that worry Fuller too. Increased bruising and petechiae, red spots on her skin that indicate bleeding and broken capillary blood vessels, are a daily reality for Layla.
So are rashes inside her mouth that make it painful and difficult to eat and the extremely red, dry skin that is a side effect of the medicine she takes.
"Two years ago, you'd see her and never know how sick she was," Fuller said. "Now you see her and she looks sick. She feels sick."
Layla is growing up with the illness, and there are days when she pleads with Fuller, asking when she'll feel better.
“She says, 'Mom, why can’t I be normal?,'" Fuller said. "'Why can’t my match be out there? Why can’t I have this treatment done? I just want to be a kid.' It's heartbreaking. She knows the transplant is a cure. She wants to have it yesterday."
Two weeks ago, Fuller said, specialists told her there's a less than one percent chance a perfect bone marrow match will be found for Layla through the national registry.
"I was devastated," Fuller said.
That's why it's time, she said, to consent to a half-match bone marrow transplant.
"Her doctor said when she started to go downhill we needed to act," Fuller said. “I’ve come to point where, she’s ten years old and, what if I lose her and she didn’t get to enjoy her life?"
Planning for a transplant
Later this month Layla and Fuller will meet with her doctor at University of Minnesota Masonic Children's Hospital to prepare for the half-match bone marrow transplant.
The procedure will take place there early next year, after she undergoes high-doses of chemotherapy. Layla will remain there for up to six months.
Layla's father, Rob Sands, 61, whose bone marrow comes the closest to matching his daughter's, has agreed be her bone marrow donor.
He said Layla has handled her condition with bravery.
"She's a trooper," Sands said. "She just goes with the flow."
Still, he said, her prognosis has always been hard to accept. Now he hopes he can do something to help her.
"I love her so much, I can't think of anything ever happening to her," Sands said. "I'm hoping this is successful and that it works out."
Fuller's husband and Layla's step-father, Jason, is currently deployed with the military in Afghanistan. The couple has five children. Insurance will cover most of Layla's medical bills, but Fuller said her family will have travel, food and lodging expenses, as well as daycare costs for her two younger children. She wants to stay with her daughter during her stay in the hospital.
Fuller knows it won't be easy, for Layla or her family, but the procedure can't wait any longer.
"I've watched her go down hill," Fuller said. "I can't watch my daughter slowly die."
An online fund raising page has been established to help Layla Sands and her family during her upcoming half-match bone marrow transplant. Find it here: https://www.youcaring.com/laylakaye-692517
You can also find it online by searching "Help Layla Kaye with her bone marrow transplant" at www.youcaring.com