A Holly Springs family is calling on their fellow North Carolinians to help save their daughter's life.
A Holly Springs family is calling on their fellow North Carolinians to help save their daughter's life.
Charlotte Akers was diagnosed with severe combined immunodeficiency (SCID) when she was only a week old. The rare genetic condition prevents the body from building its own immune system.
Now at five months old, her parents shared she is given between 5-7 different medications a day to protect against different germs.
"Most new parents when they have kids, they have family members come and help and they have friends - we weren't allowed to have any of that," shared Charlotte's mother Lindsay. "Anyone who came and visit had to either go through a quarantine or had to gown, glove and mask."
Both parents now work remotely and rarely leave their home. Lindsay described they must live "like COVID, but we're the only ones participating."
Even the family's 11-year-old son wears PPE inside the home and immediately showers and disinfects his backpack after returning from school every day.
"At 7 days old, to find out that the disease that my daughter was diagnosed with does not have a life expectancy past two, and to try to go through all of the stages of grief of 'Am I going to lose my child?'" shared Lindsay.
The genetic testing that caught Charlotte's condition only became a requirement in North Carolina in 2018. The state was one of the last in the country to implement the screenings.
"What's sad about it is the fact that other parents had to lose their kids for the laws to come into place," shared Charlotte's father Alex. "It's like, 'Thank you, but we're sorry at the same point because you had to lose your kid so that we may not."
The family has joined the National Bone Marrow Registry (NBMR), formerly known as Be the Match.
A bone marrow transplant would be a complete cure for the little girl.
"She would be able to go on and live a normal, healthy life," expressed Lindsay. "She will be able to go on and go to preschool and go to places like the park and play with other kids."
A donor can join by texting 'CharlotteRey' to 61474 to receive a free cheek swab via mail. You can also register online.
Younger cells have been shown to lead to better long-term survival for recipients and donors must be between 18-40 years old. Most donors can return to work or school within a few days, according to the registry.
The family shared there is only one known donor registered through NBMR that could be a 9/10 match for Charlotte who lives overseas.
Charlotte is unable to receive the transplant until she turns one and the family is hoping a perfect 10/10 match will join the registry before then.
Alex described the effort as two-fold.
"There's a selfish goal that I want to see my daughter grow up," he said. "Then there's the goal that you hope it helps other people because there's no guarantee with any of it that if anyone signs up, it's for you."
The family shared they're remaining hopeful their cure will come and are working to get as many people enrolled in the registry as they can.