COLUMBIA, SC (WIS) - Imagine if you or your child couldn’t go out, spend time with friends, eat at a restaurant, or really do anything- all because the risk of germs could potentially kill you.
5-year-old Brelynn Seeger, of Blythwood, has dealt with a very rare Combined Variable Immune Deficiency (CVID), called IKAROS, ever since she was just 11-months-old. According to Brelynn’s mom, Mandy Seeger, she is one of thirteen people nationwide with this gene defect.
Mandy says Brelynn was born without any complications. Mandy had a normal pregnancy and delivery.
“Brelynn was 11 months old the first time she had any illness,” Mandy said. Mandy tells WIS that in May of 2014, Brelynn had a low-grade fever and was diagnosed with an ear infection.
“She was put on antibiotics. The following week, she was still not better, more antibiotics, and double ear infection. The third week, still worsening, we were sent for an x-ray,” Mandy said.
After weeks in and out of doctors’ offices, it was discovered that Brelynn had pneumonia.
“She never recovered from it. She was sick for approximately two weeks after that, and her oxygen levels went down,” Mandy said.
From there, Brelynn was admitted into the hospital.
“After being lethargic and not getting better, despite numerous antibiotics for a month and now needing oxygen, I pushed to have her checked for everything under the sun,” Mandy said. “We had been in the hospital at least a week and she was still progressively worsening.”
They called in a pulmonologist to perform a bronchoscopy. During the procedure, Brelynn quit breathing multiple times and came out of the procedure center on life support.
On June 25, Brelynn went into cardiac arrest while on life support. “We were told there was nothing else they could do for her,” Mandy said.
Doctors wanted to send Brelynn to MUSC for an Ecmo procedure.
“They took us to MUSC to see about an ecmo procedure, which actually oxygenates the blood but drains the blood completely from your body.” Mandy said.
The morning they were going to start the procedure, Brelynn’s mom says her oxygen levels started changing and she came off life support. On, July 3, 2014, Brelynn was pulled off the ventilator and breathing on her own.
Since that time, Brelynn has battled several illnesses and has been in and out of the hospital.
“Brelynn has had multiple bone marrow biopsies, aspirations, pneumonias, MRSA, viruses, bacterial infections, mouth ulcers, allergic reactions to the infusions, frequent hospital stays and
at times- we are at doctors’ offices daily.” Mandy said.
Mandy tells WIS that Brelynn is being watched for Leukemia because the other patients with this immune deficiency developed Leukemia at various ages. With germs being a high worry, this immune deficiency limits Brelynn’s life.
“The bone marrow is just not producing what it needs to produce to keep her healthy, and over the years, she’s getting sicker,” Mandy said. “She’s never been to school, she’s not allowed to be around other children.”
Now this family is facing a difficult choice to go forward with a bone marrow transplant- which doctors say is the only cure.
“We were told with her deficiency, the odds were about 60%. It’s hard making that kind of decision. Do we chance it and let her get sick and she pass that way, or do we try to cure her and give her a chance at life?” Mandy said. “We’ve seen her get sick, we’ve seen her go from a normal happy child in the hospital one day into 24 hours later on oxygen. So at this point, it’s definitely something we’re going to have to do.”
On Friday, the family learned that Medicaid gave the approval for the transplant. Brelynn will have the transplant at Duke Hospital in N.C.
“We have her post-transplant work-up scheduled for the first week of March. We will be there for two weeks for that,” Mandy said. “We will return home for a week or two, then we will be moving to Durham (Duke) for 6 months to a year.”
Doctors say Brelynn has to have around-the-clock care while in the hospital from 1-2 family members at all times.
Mandy tells WIS she took a year leave of absence from work and her father, Scotty, will take the time off as well.
“Brelynn basically will be quarantined for up to a year after transplant,” Mandy said. “He [Scotty] works with the public and cannot bring the germs in the hospital to her, as they could potentially kill her.”
With the family not working and having to move to N.C. for 6 months for this transplant, there will be a fundraiser held for Brelynn on April 14, 2019 at Doko Meadow’s Park form 2-8 p.m.
You can also help donate to the family by clicking here.