Family Seeks Help for Child with Rare Disease

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by Alice Thomas-Tisdale

On June 25, Janiya Bowens will be 10 years old. Quite a feat for Jackson’s little champion. Since age six, Janiya has struggled to maintain her balance, keep her eyes open, move her limbs, keep her food down, swallow, and lately, smile or utter a single word.

Janiya suffers from spinocerebellar ataxias. It is a hereditary defect in a certain gene that makes abnormal proteins. The abnormal proteins hamper the ability of nerve cells, primarily in the cerebellum and spinal cord, to function properly and cause them to degenerate over time. As the disease progresses, coordination problems worsen.

 

According to the Mayo Clinic, researchers have labeled 28 autosomal dominant ataxia genes with the designation SCA1 through SCA28, generally numbered according to their order of discovery, and the number continues to grow.

Janiya suffers from SCA2, only the fifth known type case in the world. Janiya’s family is fully committed to making sure she has every chance of survival. The current challenge is fighting Medicaid’s refusal to approve therapeutic intervention, such as physical, occupational and speech therapy.

“Janiya’s doctors don’t know what’s going to happen to her. They don’t know enough about the disease. It’s so rare,” says grandmother, Lois Bowens. “We think Janiya may be the only child and only black person with SCA2. It took a long time to even find out what was wrong with her. We don’t know what to do either, but we have to keep trying different things. We can’t give up on her. What we learn will help others.”

Last March, the Make A Wish Foundation sponsored a trip for the family to Disney World. Since returning, they still feel like they are on a roller coaster ride. Janiya’s ability to breathe and swallow declined significantly. Emergency visits to Baston Children’s Hospital at the University of Mississippi Medical Center increased, but so did the discharges, because the only therapy available to her were ineffective.

The last 10 months have been increasingly challenging for Janiya and her family, even with the assistance of a duty nurse 16 hours a day, 7 days a week. In July 2012, a tracheal tube was surgically inserted. Janiya hasn’t smiled or spoken since.

“If we could just try the speech therapy; just try it! We don’t know if it will work, but we should try,” says mother, Ardra Bowen. “My child is so beautiful when she smiles. I miss her smile so much. All I have are pictures of her smiling. I want her to know she can talk. With the trac in her throat, she doesn’t know she can talk. Once she hears herself make noises, I think she will begin to try words. I believe a speech therapist can help her.

“Janiya also needs occupational and physical therapy,” says Ardra. “Medicaid won’t pay for it because they say they don’t know if it will help. I don’t know what else to do but find another way to pay for the therapy. I know we can’t afford to pay for it. I have three other children who do not have the disease. It’s hard on the two older ones to watch their sister struggle to breath. Of course, my newborn doesn’t know what’s going on.

“It’s a lot on us, but we don’t complain because we love her so much. Janiya is a wonderful child. Before she got sick, she was so full of life. She knew everything and everybody. Now, nobody can tell us what will happen to her. She’s still in there fighting so hard to do the things she used to do. We can only pray we can get her some therapy before it’s too late.”

Health care advocates, agencies, philanthropists, businesses, churches, organizations, or others in a position to assist the Bowens family with acquiring speech therapy, occupational therapy and physical therapy are encouraged to call Lois Bowens at 601-669-6343.

Special to the NNPA from the Jackson Advocate Publisher

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