From mystery to a miracleBy JAMIE PATTERSON,
RayAh Young was known as the “Mystery Baby.”
After what seemed like hundreds of tests, physicians had no idea what was wrong with her. She was only two days old when she began to show problems. In fact, she had even stopped breathing in her father’s arms.
But after months and months of testing, there was finally an answer to deliver to her family. She was diagnosed with what is known as GRIN2B, which a genetic disorder that causes developmental delay and intellectual disability. Symptoms may include low muscle tone, seizures, behavior problems including autistic features, abnormal movements and developmental regression.
And there are only 100 reported cases of the rare disorder in the entire world.
RayAh is no longer the Mystery Baby. She is the Miracle Baby.
“She is a miracle to us,” said Marlana Young, RayAh’s mother. “And we have hope. She is so young, but we are praying that she will continue to improve. She is starting to show a few signs of improvement, and there is hope in that. She is a miracle.”
Marlana said May 1, 2018 began as the happy day it was intended to be as she and her husband Charlie prepared for the arrival of their daughter. The couple were eager to meet the newest member of their family as the pregnancy proved to be a healthy journey.
“We knew that our bundle of joy was going to be breathtaking,” Marlana said.
But after 12 hours of labor, Marlana headed into surgery for an emergency C-section.
“Our precious baby girl soon arrived,” Marlana said. “Looking at the excitement in my husband and children’s eyes and the joy in my mother and godfather’s face was amazing.”
At first, RayAh seemed like a healthy, happy baby. But two days later, she stopped breathing in Charlie’s arms. She was rushed to intensive care and treated back into a stable condition.
“Deep inside, I knew something was wrong,” Marlana said. “My motherly intuition was not wrong.”
Marlana said, at first, it was suspected that RayAh ingested a large amount of fluid during the C-section. Her condition was considered a C-section complication.
But RayAh began to get worse with seizures, as many as 20 a day.
“We were back and forth to the hospitals constantly,” Marlana said. “I was so scared one of her episodes was going to happen when I was home alone. I simply wanted answers. I didn’t want to keep running tests with no answers and keep betting on her life.”
The Young family was finally told to head to the University of Mississippi Medical Center because RayAh’s condition was “way beyond their scope.”
RayAh remained at the UMC hospital for two weeks. In fact, she has spent 10 of her 17 months alive hospitalized.
“They started calling her the Mystery Baby because they honestly didn’t know what was going on,” Marlana said. “It wasn’t until I took her to an eye appointment that we began to get answers. God was working miracles, and He was in control.”
A lady in the waiting room, who had two adopted daughters from China, noticed RayAh and her symptoms. She began to ask Marlana questions and shared her own journey with her daughters and their medical conditions. She suggested a hospital in Memphis, where her own daughters were treated with brain illnesses.
It was at that Memphis hospital where RayAh’s condition was finally diagnosed. It was GRIN2B, which is the name of the gene located on the twelfth chromosome. With the condition, the gene was either deleted, duplicated or rearranged. The reason is unknown.
“RayAh was put on a number of medications, and we did notice a decrease in her seizures,” Marlana said. “It was then suggested to put her on the Keto diet. After the diet and medications, her seizures went down to one or two a day. On the Keto diet, the longest she went without a seizure was 14 days.”
RayAh also deals with being fed through a tube, a tracheostomy, cortical blindness and mobility issues.
“Our main thing is managing her seizures so that she can learn what she is missing,” Marlana said. “She can’t hold her own head up or sit up. She is also non-verbal. She has her own way of letting you know she is upset.”
Marlana said she would like to meet other families who are dealing with GRIN2B. The rare condition is even more rare among African-Americans.
“I attended a conference, and it felt good to see that other people understand,” Marlana said. “God has put all these people in my life, and you never really know what other people are going through. I want to be able to reach out and help those are dealing with this too. Even if it is just one family…”
The Young family is hosting a GRIN2B Awareness Walk and Picnic on Nov. 9 at the Wardell Leach Recreational Complex to raise awareness and funds for research.
“I want to help let other know what GRIN2B is and to raise funds to research this condition in an effort to find answers,” Marlana said. “Join us as we continue this journey.”