Mother wants help for nine-year-old diagnosed with genetic disorder

When nine-year-old Ashara Channer was born, her mother knew something was wrong. Numerous trips to the doctor did not show any medical issues, but when Ashara was six years old she was diagnosed with Marfan's syndrome, a genetic disorder that affects the body's connective tissue. Connective tissue holds all the body's cells, organs and tissues together. It also plays an important role in helping the body grow and develop properly.

Channer's mother, Shamelia Baker, told THE STAR that seeing her once-energetic daughter in excruciating pain has left her extremely sad and disheartened.

Currently Ashara is suffering from heart complications, bone deformity and crowded teeth.

"She was diagnosed three years ago, at the time they caught it, it was too late. She was already partially blind in her left eye and now her sight in her left eye is completely gone. I can't let her play more than 15 minutes and you know for a child that may not be enough, but if she goes over that limit she is going to start blowing short," she said.

Autism

Baker said she was told that there was a 96 per cent chance her baby girl would have autism, however, checks were done and she was declared okay.

"I said to them that it can't be okay because when she wanted to take something out of my hand, even though it is right before her face, she is passing around it, and they said no man she is okay, so I took the doctors, word for it," she said.

The Stony Hill resident said that the diagnosis came after teachers at Channer's basic school got concerned when they realised that in order to see, she had to tilt her head to the right. The 32-year-old mother of three said it has been a roller-coaster ride since the diagnosis. Having health issues herself, Baker said that she cannot work to support her child and so they are solely dependent on her spouse.

"The only person who is currently working is her stepdad. I have heart and thyroid problem, but I can't focus on me, I have to focus on her, and it is kind of stressing because the doctors are clueless as to what to tell me. The knowledge that I have gained so far is from my own research and from talking to parents overseas who have children with the same problem," she said.

With the many problems that her daughter is facing, Baker said she is most worried about her eye sight, and as such, she is appealing for help to purchase a much-needed pair of glasses.

"She is barely seeing out of the right eye. I was told that $46,000 would cover the glasses and other fees, but it can be higher, depending on how soon I get her to do the test," she said.

Anyone who is willing to help Ashara Channer is asked to call her mother, Shamelia Baker, at 876-834-0860 or 876-288-7096.