BLYTHEWOOD – Eight months after receiving a bone marrow transplant to treat a life-threatening immune disorder, 6-year-old Brelynn Seeger of Blythewood is showing hopeful signs of improvement, her mother says – but she still has a lot of healing ahead.
The community has been cheering for Brelynn’s recovery ever since her deteriorating health made the transplant necessary. Not only was it a life-saving measure, but it will also give her a chance of living a normal life.
“If her B cells are coming back, the hope is that within a year the cells will grow enough to where she could have a normal immune system,” says Mandy Seeger, her mother. “The transplant would be her cure where she would never have a faulty immune system, where she could live everyday life, where she could go to school.”
That, of course, is what she’s hoping for. It’s been a long road for little Brelynn, who her mother says appeared to be a healthy child until she suffered a severe bout of pneumonia that began a month before her first birthday.
The prolonged hospital stay prompted doctors to search for answers, and what they found was a potential death sentence: IKAROS, a rare immune deficiency that leaves those who have it unable to fight off even the mildest of infections.
“The immune system is made up of two kinds of cells: B cells and T cells,” Seeger explains.
With a treatment developed in just the last few years, B cells can be replaced with weekly injections – at least to the minimal level needed to stay alive. T cells, however, can only be replaced through a bone marrow transplant.
At first, she says, only Brelynn’s B cells were low. To counter that, she received weekly injections of B cells extracted from donated blood, but her compromised immune system meant she still had to be protected constantly from germs.
She couldn’t attend school or church, participate in activities, visit stores and public places, or play with other children. Any trip out of the house required constant sanitizing. The whole family’s life was drastically impacted, but it was necessary; for Brelynn, it was a matter of life and death.
Then, her T cells started to fail. Already at levels much lower than normal, they began to decline rapidly – a situation that, without treatment, would become fatal.
Her doctors determined that she needed a bone marrow transplant, and fortunately a matching donor was found. So, in April the whole family moved to Duke University Hospital: Brelynn and her parents, older brother, and grandmother.
There she received chemotherapy and then the transplant. The side effects of her treatment were difficult, but slowly and with much suffering Brelynn began to improve. In September the Seegers were finally able to come home to Blythewood and continue her care closer to home.
Now, Seeger says, Brelynn’s T cells are measuring in a much improved range. Her B cells, which unfortunately were wiped out by the treatment of a virus she contracted, have not come back yet. That can take time, she says – and meanwhile she’s continued the weekly infusions of B cells.
“It’s kind of like a roller coaster right now,” Seeger says. “Her body’s trying to grow the new cells, so they’re up and down…. She has little hiccups every now and then. But she’s doing great, she really is, considering everything she’s been through.”
Brelynn’s still-weak immune system means she must remain isolated. But now a teacher visits for homebound instruction and she occasionally, with lots of germ precautions, can go out to eat with her family.
After all these months of treatment – and years of Brelynn’s illness driving so much about her family’s lives – her mother is hoping for the light at the end of the tunnel.
In normal life, she says, it’s easy to take health for granted and complain about everyday things like work and school and busy schedules. But when you’re in a hospital room with a child who might not survive, all of a sudden those routines are the things you crave – a return to normal.
Her vision for Brelynn’s future is simple: “happy and healthy.”
“Our hope is that we can go back in March and that the B cells are starting to grow again,” she says. “It could take longer, and we’re just waiting – and while we’re waiting on the B cells to come back, we’re also waiting while the T cells have time to grow.”
Seeger says her family is grateful for all the support they’ve received – the cards, the care packages in the hospital, the monetary donations that have helped cover expenses during the hospital stay, and more than anything else, the prayers.
If the treatment works completely, the world will open up for Brelynn. She’ll be able to go out, eventually go to school. She’ll have a chance to grow up.
“Just keep praying,” she says. “Keep us in [your] thoughts, and just pray that her immune system continues to grow and that she gets to live a normal life.”
