Breelyn Seeger cuddles with her mom, Mandy Seeger, during the Family Fun Day fundraiser at Doko Park on Sunday. | Photos: Barbara Ball
BLYTHEWOOD – Last week, Mandy Seeger received the best news she’s had in a long time. Doctors at Duke University Hospital notified her family that a donor has been found and approved whose bone marrow is a match for her daughter, Brelynn.
Brelynn, 5, has suffered from a debilitating immune deficiency called Combined Variable Immune Deficiency (IKAROS) for most of her life.
She and her family – mom, Mandy; dad, Scotty and her brother Bryson, 16 – left Wednesday for Durham, N.C. where they will remain for up to a year as Brelynn undergoes treatment that, hopefully, will cure her illness.
But the road to wellness will be long and difficult for the five-year-old and her family.
“For the first week or so, she’ll have several doctor visits. Then on April 29 she will be admitted to Duke, where a tube will be inserted into her arm and through the main artery in her heart where it will remain for six months. Three lines will run off that tube for pain medication, nutrition and blood sampling.”
And that’s just the beginning.
“To prepare her for the bone marrow transplant, she will undergo chemotherapy for 8 – 11 days,” Seeger said, “and will remain in the hospital for up to 45 days.” Then the family will have to remain in the Durham area near the hospital for up to a year.
“We will all stay at the Ronald McDonald House for the first two months, then we hope we will be able to move into a small apartment near the hospital for the remainder of our stay,” Seeger said. “But it’s first come, first served, so we hope one will be available when the time comes.”
During that time Brelynn will continue to remain isolated until her immune system becomes strong enough to ward off germs that, in the past, could have proven fatal.
Both Mandy and Scotty are taking year-long, unpaid leaves from their jobs – she works from home for Amazon and he is a business technician for Spectrum.
“My grandmother will also be going with us to help look after Brelynn. While she’s in the hospital, at least one of us is required to stay with her every moment. We’ll be responsible for much of her daily care – mouth washes four times a day, taking her on short walks every day, even when she doesn’t feel like it, bathing her and other things,” Seeger said. “We’ll take shifts in her hospital room around the clock.”
Bryson will also move with the family and attend school online.
“He didn’t want us to go off and leave him here,” Seeger said. “We’ll all be together through this.”
Seeger said there are many risks for her daughter during and after the transplant.
“But it’s our best hope for her to have a normal life,” Seeger said. “It will be very difficult and sometimes scary for her. We are trying to prepare her as best we can. The doctors have told us to tell her what will be happening, to explain everything before it happens.”
Because of Brelynn’s susceptibility to infections, she has had serious bouts with pneumonia, flu and other illnesses since birth. For that reason, she has spent her young life in near isolation – from friends, from playing with other children, from going shopping and eating out with her family.
The trials have been many for the family during Brelynn’s illness, Seeger said. Two years ago, Brelynn was hospitalized with pneumonia. She was so ill that she was on life support for a while, her mother said.
“After that,” Seeger said, “the doctors suggested we take Bryson out of school for a year and a half. The germs he brought home from school were too dangerous for Brelynn.”
During a benefit in Doko Park last weekend, the family’s church, Pineview Baptist, organized a family festival to raise funds for the myriad of expenses the Seegers will have during the next year.
It was a rare outing for Brelynn.
“She just loved it and had so much fun. She ran and played with the other kids from church, ate hot dogs and just had a good time,” Seeger said.
The event raised about $10,000, something Seeger said her family greatly appreciates.
“I can’t say how much we appreciate our church members who put this together and worked so hard on it,” Seeger said. “And we are thankful for everyone who came out to wish us well and donate their time, money and effort for us. It meant so much.”
“After we got home, I asked Brelynn what she enjoyed the most about the park and she said, “’Playing with Amy [the church pastor’s daughter].’ It’s such a little thing that most kids take for granted, but it’s something she almost never gets to do. Hopefully, after this year, she’ll be able to play with other children and do other things that children her age enjoy,” Seeger said.
The church’s fundraising efforts are continuing with the hope of raising at least $20,000 more. To donate, contact Carla Hawkes at 843-408-3944 or the church’s pastor D. T. Kirkland at 803-381-3898.
Well-wishers joined the Seeger family on Saturday for a Family Fun Day fundraiser organized by Pineview Baptist Church.
