Child diagnosed with rare disease at Batson - MSNewsNow.com - Jackson, MS

Jackson 9-year-old diagnosed with rare disease

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Nine-year-old Janiya has Spinocerebellar Ataxia 2 -- a genetic disorder that is progressive and degenerative. Nine-year-old Janiya has Spinocerebellar Ataxia 2 -- a genetic disorder that is progressive and degenerative.
While Janiya has lost control of her body, her reflexes and her coordination, her mind is in tact. While Janiya has lost control of her body, her reflexes and her coordination, her mind is in tact.
"Overall, and her family will tell you, she is very much there, interactive, understanding her environment," Dr. Boyte said. "Overall, and her family will tell you, she is very much there, interactive, understanding her environment," Dr. Boyte said.
"She knows everybody. She just can't respond when she wants to. You can see her mouth move and she wants to respond but...she'll get there," said Janiya's mom. "She knows everybody. She just can't respond when she wants to. You can see her mouth move and she wants to respond but...she'll get there," said Janiya's mom.
JACKSON, MS (Mississippi News Now) -

Lois Bowens' heart aches unbearably for her granddaughter, Janiya, who was diagnosed two years ago with a very rare disease.

"Sometimes I ride around and I just want to cry because of the things Janiya used to do," Bowen said. "She was just so full of life and I just want to scream sometimes. Why Janiya? She's nine years old."

"I just pray and ask the good Lord if anything happens to Janiya, please wake me up, some kind of way. I make sure she's ok. I change her pull up and I put her up in the bed. I make sure her neck is clean and we go from there," Bowens added. 

Dr. Rick Boyte says Janiya has Spinocerebellar Ataxia 2 -- a genetic disorder that is progressive and degenerative. He manages the symptoms of Janiya's disease at the Palliative Care Unit at Blair E. Batson Hospital for Children.

But there is no disease treatment or cure.

"She has to have somebody around her 24/7 due to the trachea she has. She's tube fed. Nothing by mouth," Janiya's mother Ardra Bowens said.

While Janiya has lost control of her body, her reflexes and her coordination, her mind is in tact. 

"Overall, and her family will tell you, she is very much there, interactive, understanding her environment," Dr. Boyte said. 

"She knows everybody. She just can't respond when she wants to. You can see her mouth move and she wants to respond but...she'll get there," said Janiya's mom. 

With limited options for Janiya, her family would like to try various therapies.

"I'm just trying so hard to get somebody to sponsor her. Therapy is very expensive. I just want somebody to help her so she can have some quality of life," Lois Bowens said.

"Some speech therapy. Physical therapy. Occupational therapy," Ardra Bowens added. 

That's not a lot to ask for a family that's running out of options. Janiya's mom says she really hopes to restore some of Janiya's abilities.

"I would like for her to be able to speak. At least smile. I guess if we can get that back first then all the others will fall in place," Ardra Bowens said.

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