Re: Holly’s hope Blind girl’s family seeks experimental treatment in Asia - Mercer Island Reporter

schwartz — Wed, 25 Feb 2009 21:22:40 -0000

http://www.stemcellschina.c...

Sight to Behold
Septo-Optic Dysplasia
Sunday, 22 February 2009 17:03

Source: Belfast Telgraph

By John McGurk

It's the beautiful day a local mum and dad only dared to dream about before — their little blind daughter being able to SEE.

Remarkable Dakota Clarke has emerged from a lifetime of darkness and is stepping into the light of a new life of sight

There were tears of happiness and jumps for joy, as the loveable Newtownabbey girl stunned staff at a hospital in China, by seeing around two feet in front of her — for the first time.

Dakota, who will celebrate her third birthday on April, was born with an ultra rare brain condition, called Septo-optic Dysplasia, which caused blindness and a number of other serious problems, including hormone deficiencies and low muscle tone.

Last March, Sunday Life helped to launch devoted parents, Wilma and Darren Clarke’s campaign to raise £30,000 for revolutionary stem cell treatment in China — in a bid to help give her some sight. Big hearted Sunday Life readers responded in their droves to donate cash. And, along with help from family and friends in a series of fundraising events, the magical £30,000 figure was reached.

Earlier this month, the Clarkes flew out to Qingdao People’s Hospital in eastern China. Dakota started a course of injections, each containing 10-15 million stem cells from the blood of umbilical cords.

Last week, the Clarkes were delighted when their beautiful blonde haired daughter showed signs of reacting to light and focusing better than before.

But absolutely nothing could have prepared them for the extraordinary leap into the light which Dakota made last

Monday. Ecstatic dad, Darren told Sunday Life: “We had started to notice, after the second injection, that she was able to focus, if we held a finger out to her.

“We were thrilled. But we didn’t dare to be over confident. We have always been cautious and not have great expectations.

“Then, last Monday, the doctors came in to see her. We mentioned to them that we thought that there had already been a noticeable improvement. But they were adamant that it would be too early.

“One of the doctors held up Wilma’s hairbrush about two feet away from her face. Straight away, Dakota said ‘brush’ and then grabbed it!”

Darren said that Dakota’s new found vision had left him “totally gobsmacked, happy and excited”.

Added the dad-of-two: “The doctors came back the next day again. Wilma moved her finger around and Cody’s eyes followed it. Then she did the same with Cody’s dummy and then her teddy bear and she followed them all — just like a normal child, with normal sight.”

Last Wednesday night, Dakota amazed her mum and dad again — deciphering

lights, in the distance. Revealed Darren: “We were going into Qingdao city for dinner. On the right hand side of the motorway, there is a big Olympic park with an Olympic ring sign lit up.

“As we were driving past it, Cody suddenly piped up ‘oh, look at those lovely lights’. I was so stunned that all I could say was ‘what did she just say?’

“It has been incredible.”

The doting dad, who gave up his job, to become a full-time carer, with his wife, Wilma said that it was “really hard to put into words” how he felt after witnessing the dramatic improvement in Dakota’s condition following the treatment.

Said Darren: “We are still trying to get our heads around the fact that Dakota can actually see something for the first time in the three years of her life. It makes all of the effort worthwhile. Even if things just stay the way that they are now and her condition does not improve any more, we would still be absolutely delighted.

“This experience has been like other parents seeing their child taking their first steps or hearing their first words.

“It’s been that special kind of feeling — only far better!”

The three stem cell injections have also had a positive effect on Dakota’s stomach and constipation problems.

She is due to have another three intravenously administered treatments. But, sadly it seems as if she will not have a seventh injection, as the money cannot be raised to cover its additional cost.

Mum, Wilma admitted that she shed tears of happiness after Dakota was able to see her face for the first time.

Said Wilma: “When she saw the brush and grabbed it, I jumped up and the doctor even jumped up.

“There are just no words which can adequately describe how I feel. We didn’t dare have our hopes built up. We also had to be prepared in case the treatment didn’t work. But after what happened, I shed a few tears, I can tell you. They were tears of joy, most definitely.

“Maybe from now on, she will not be bumping into things and hurting herself — stuff that broke my heart to see. That is all I ever wanted.”

Re: Holly’s hope Blind girl’s family seeks experimental treatment in Asia - Mercer Island Reporter

schwartz — Wed, 25 Feb 2009 18:19:00 -0000

This article does not accurately portray Holly, her family, or the procedure in Asia. This article does not talk about the children whose vision is restored and how their lives have changed for the better. This article does not talk about what it is like to raise a child with ONH/SOD, something that is a daily struggle. This article does not talk about how negatively Holly is treated in the community because she is different.

Deciding to take your child thousands of miles from home for any procedure is not an easy decision. It takes time and research and support, something each and every family has and will go through in regards to this procedure and condition. It is not taken lightly and all risks are considered. Parents with ONH/SOD kids alone know what it is like to raise and care for these children, and until you have walked a day in their shoes, you will not fully grasp the depth and courage and patience it takes each and every day. Restoring even a slight amount of vision in an ONH/SOD child is invaluable to the life of the child and the child's' future.

This article uses anticdotal evidence to support the procedure and scientific evidence against the procedure, an unbalanced and unfair tactic against the Connor family.

This article uses quotes like “Vision problems should be the least of their concerns”... vision is the root of all the behaviors and characteristics with these children, which any parent with an ONH/SOD child would agree.

“No one has been able to get it to work on animals, and believe me, it’s been tried.” and “They may thoroughly believe that this is working, but they have no way of knowing it, because they don’t monitor the outcomes,” - Every child who has gone to Asia has seen improvements in their vision whether they were blind or visually impaired, a fact that cannot be ignored. (http://www.stemcellschina.c...

I graciously encourage those of you reading this article to do further research of your own before forming opinions based on this article.

Thanks for your time!

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When a parent is first told that their child has ONH/SOD, the first question is always the same, "What is that?" After looking online you begin to realize there isn't much information, support groups are non-existent, and medical documentation is hard to find. Basically, you feel alone in the world with no answers. There is no explanation as to what causes ONH/SOD. It is not hereditary, genetic, environmental, etc. ONH/SOD is now one of the major causes of vision loss in infants as it accounts for about 15-25%. Experts are torn between either the incidence that ONH/SOD seems to be rising, or the fact that more children are being diagnosed now that doctors are aware of the condition. Parents are slowly beginning to speak out for their children and create awareness, but there is a long road ahead.

Holly does not have ONH, she has SOD. Not to confuse, ONH/SOD are very similar, the only difference being how the brain develops as a fetus. Both ONH/SOD characteristics include visual impairments, hormone deficiencies know as either Panhypopituitarism or Hypopituitarism, and autistic behaviors. Some children also display savant syndrome and echolocation, which are both rare.

A person with Septo Optic Dysplasia (SOD) has optic nerves that are small and poorly developed. Instead of having over 1 million connections (nerve fibers) from each eye to the brain, people with SOD have far fewer connections. The more connections between the eye and the brain the better the vision. Some people with SOD have near normal vision in one eye, others have decreased vision in both eyes, and others are severely affected and nearly blind.

To learn more about ONH/SOD please google the condition or visit: (http://www.magicfoundation....

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Re: Holly’s hope Blind girl’s family seeks experimental treatment in Asia - Mercer Island Reporter

Re: Holly’s hope Blind girl’s family seeks experimental treatment in Asia - Mercer Island Reporter