By Adam Droscha
Staff Writer
There aren’t many things more disappointing to a kid than being told he or she can’t play. To be told kicking a ball, going swimming, riding a rollercoaster, or jumping on a trampoline are not options or too dangerous can really take the zeal out of childhood.
All Layla Sands wants to do is be as physically active as her imagination. She dreams of running, and jumping, and playing without causing internal bleeding or injuring herself.
Layla was diagnosed with blood marrow failure, or more specifically dyskeratosis congenita when she was 5 years old. According to her mother, Jen Fuller, she can hardly remember a time before her diagnosis, before the infusions, before doctor visits, and before she had to be careful with the simplest of actions. While she’s learned to live with the reality and restrictions of her disease, Layla may not have to wait much longer for that untamed and unmonitored playtime for which she’s waited so long.
Recently, and with great trepidation, Jen decided it was time to move toward the next-best option for Layla. After months of bone marrow drives, searching bone marrow registries, and swabbing the mouths of complete strangers, Jen was running out of options. Geneticists informed her that Layla’s genetic makeup is so unique that she had a less than 1 percent chance of ever finding a perfect bone marrow match. The next-best option for Layla would be a haploidentical transplantation, which involves a bone marrow transplant from a donor whose marrow is a 7 out of 10 match. It’s not ideal, and there are more risks with a less than 10 out of 10 match, but Layla isn’t getting any better.
In the last several months Layla’s symptoms have only gotten worse. While she looks and talks like any other middle schooler, she suffers from headaches, stomachaches, and severe bruising. Her immune system is not stable, and if she contracts even small illnesses before the transplant she will be unable to have the procedure. Jen knows the time is now, and Layla is ready.
There are difficulties with Layla’s determination and willingness to go through with the procedure, however. Jen has had to explain to Layla the risks of treating her disease, and explaining the effects of the haploidentical transplantation is no different. On Monday, Nov. 28, Layla will meet with doctors and social workers so they can explain to her the seriousness of the transplant. While she’s not pleased with potential outcomes, like losing her hair, Layla remains firm in her desire to go through with the procedure.
The procedure and all of the other treatments have taken their toll on Layla’s family. The financial burden from medical bills makes the procedure slightly less appealing, and places more stress on the holiday season. Layla will have the transplant over Christmas break, and Jen is having trouble figuring out how to get her other two children to Minnesota, where the procedure will take place. She’s also trying to winterize the house and find accommodations for the family pets.
There are a number of ways readers and members of the greater Charlotte community can help and encourage Layla. Receiving mail and encouraging words is one thing that brings Layla delight. Although Jen does not yet have a mailing address for their time in Minnesota, she and Layla can be found on Facebook. Financial support is also appreciated to cover the cost of medical expenses, and those wishing to donate can contribute by looking up Layla Kaye at YouCaring.com.
