Mother's hope for blind daughter

LITTLE Lamiyah Ellsworth was just three months old when she was diagnosed with a rare brain condition which means she is totally blind. Doctors told her mother Larelle that was nothing that could be done for her little girl.

"I was devastated," said Larelle, 22, from Bradford. "I was worried that there was something wrong with Lamiyah as she didn't seem to be bonding properly. The doctors said she was okay but then her head started to grow too quickly."

An MRI scan revealed Lamiyah had septo- optic dyplasia, a rare brain condition which causes under-developed nerves from the eye to the brain

The condition causes a variety of problems including pituitary deficiencies, hormone deficiencies, low muscle tone, seizures, and blindess.

It is believed that only five in every million children has the genetic condition. But Lamiyah's half sister, Thailiah, two, has it, although she is blind in one eye.

"We recognised the signs quite quickly because of Thailiah," says Larelle.

Doctors told Larelle that there was nothing that could be done for her little girl, who also suffers from developmental delays and at 18 months old cannot yet walk or crawl.

"She's a happy baby, although she does sometimes get frustrated," says her mum.

"But my worries are for her future. I just couldn't believe it when the doctors said nothing could be done and there was no cure.

"They said that I should go home and try concentrating on helping Lamiyah deal with the condition for the future. I was truly upset as I truly thought that nothing could be done."

Unwilling to accept her daughter's prognosis, Larelle started to research the condition and possible treatment on the internet.

She discovered a hospital in China where children were being given stem cell transplants to treat septo-optic dyplasia.

The controversial stem cell treatment, which is not available in the UK, involves injecting the spinal canal with cells taken from umbilical cords of healthy babies.

"I read about this little girl who'd had the treatment and she was able to walk, talk and see to some extent. I just knew that was what I wanted for Lamiyah."

But when Larelle told her doctors about the treatment they were less than enthusiastic.

"They said that it wasn't available in this country and that it hadn't been properly tested and that I would be wasting my money if we decided to go to China," she said.

"But you will do anything for your child. If there was a chance that it would help Lamiyah to see and live an independent life then it is worth the chance."

Four-year-old Izabelle Evans travelled to China for the controversial treatment before Christmas after a mammoth fund-raising appeal in her home town of Portsmouth.

The month- long, often gruelling stem cell treatment costs between 30,000 and 50,000, and critics say it has not been properly tested.

But Izabelle's parents, James Evans and Hollie McHugh, have been amazed by the results saying that their daughter, blind from birth, can now see things three feet in front of her and has started to walk for the first time.

They say she recognises them when they walk into the room and her teachers have noticed a change in her.

For Larelle, who is starting the long journey ahead, it is music to her ears. After reading the success stories she contacted the clinic in China where the treatment is being carried out.

"I got in touch with the medical centre out there who received Lamiyah's hospital reports and she was accepted for the treatment."

Larelle and her family are planning a number of fund-raising events to raise the money needed and have started a website for Lamiyah

"I know it is a lot of money to raise, but Lamiyah is young.

My dream is to raise the money and for her to have the treatment before she starts school. It would be fantastic if she could have the treatment before she starts having to learn Braille." But some experts say there is no medical evidence of improvement in children and not enough is known about possible side-effects.

Last year a Somerset couple decided not to go ahead with the treatment , despite having raised 28,000 towards the cost. Lauren and Nick James had second thoughts about the treatment for their daughter Imogen , saying "the treatment raised more questions than answers".

But while there are apparent success stories coming out of China, parents like Larelle will do anything to give their children the chance of sight.

Larelle is angry that she was not told there was a chance that there was a cure for her daughter's condition.

"I understand that UK doctors are in the process of experimenting with this and hopefully it will be offered in the UK in the future, but if there is another place out of UK that can do it now, I don't see why we are been told not to go ahead with it, especially when its us who is trying to raise the money, because the NHS doesn't cover it.

"My baby is my world and I will do anything that can make her better. The treatment is really expensive, 50,000 is a lot of money but me as well as other parents are happy to come up with the funds by doing events to raise it."