“OPTIC NERVE TREATMENT ABANDONED” or “HOW TO REGRET FOR THE REST OF YOUR LIFE”
Posted Jan 11 2010 12:00am
“OPTIC NERVE TREATMENT ABANDONED” or
“HOW TO REGRET FOR THE REST OF YOUR LIFE”
It saddens me to see people who are on the brink of improvement for their child’s condition are turned away at the door by anti-adult stem cell nay-saying UK doctors. This event will reverberate in their lives for years to come…and unfortunately I believe the parents will regret their choice for years to come. (my comments in red) -dg
Imogen James has a condition known as Optic Nerve Hypoplasia
The parents of a girl with sight problems have given up plans to take their daughter for stem cell therapy.
Lauren and Nick James’ daughter Imogen suffers from an underdeveloped optic nerve which makes her virtually blind. Her parents believed this treatment would work miracles on their daughter’s sight. They raised over £28,000 to pay for the operation but will now return the money and give the rest to charity.
‘Former Optic Nerve Hypoplasia Patient and Stem Cell Recipient Dakota Clark is Doing fantastic’
Imogen James was born with Optic Nerve Hypoplasia which is congenital condition (i.e. present at birth). It means that Imogen is virtually blind and can only see things if they are extremely close to her. Lauren first heard about the stem cell treatment a year ago which filled her with hope. “A year ago we met with Dakota Clark’s family who’d just been to China for stem cell therapy and they had given rave reviews, [saying] how fantastic it was and how Dakota had started walking, her eyesight was better, her speech was better and she was doing fantastic. “I’ll admit at the time I thought, ‘wow this is unbelievable’ so that gave us the boost.”
Stem cell therapy aims to replace or repair damaged cells but according to the NHS ”the range of diseases where stem cell treatment is proven treatment option is still quite small”.
A few comments about this:
Adult or Repair “stem cell treatment is (a) proven treatment option” in over 170 diseases (not very small)…in about ~2000 clinical trials, ~30-40,000 scientific papers and thousands of success stories.
Nat’l Health Services or NHS provides treatments to patients so their commenting on competing medical options is extremely suspect and a conflict of interest.
I recently commented on an NHS article on MS with “More Info about MS and Stem Cells – http://repairstemcell.wordpress.com/2009/09/02/multiple-sclerosis-and-stem-cells-need-more-info/ ” My comments were removed.
They needed to raise £30,000 to pay for the operation and the flights. After raising £28,000 in a matter of months, the family was all set to go ahead and had booked flights for December 2009. So close…so close…
But then the doubts set in. “Obviously during that time we were doing a lot of research ourselves but the more and more we dug into the stem cell therapy the more answers I wasn’t finding. “I was finding a lot of questions, but I wasn’t finding any answers and unfortunately the company we were going to see, they were sort of evasive with the answers in a way, but I found out from speaking to doctors in the UK that they don’t have the answers either – no-one has.” The treatment itself involves using an intravenous drip to feed the stem cells into the body, or by using a lumbar puncture .
I have seen the answers that this treatment center (one of the most reputable treatment centers in the world) gives. They are respectful and honest and they are unwilling to make forward looking or optimistic statements. Interested patients receive the facts and nothing more. They will give you the results and experiences and data but no guarantees or promises because they can not and will not out of responsibility to their patients and their own integrity. This is not evasive, this is the way it should be!
I feel terrible for the Jameses. I wish them the best and hope Imogen’s condition improves every day. I hope they don’t regret this decision for the rest of her life…but I’m afraid they will. I hope they don’t become convinced in 2 months that stem cells are the way to go…but I’m afraid they will. I hope they have read everything available on stem cell treatment of optic nerve hypoplasia [ http://repairstemcell.wordpress.com/?s=optic+nerve ] …the story of Macie Morse who went from legally blind to driving a car, the story of American Idol candidate Devin Riley, the story of the 40 or 50 more (and counting) ONH, SOH and MD (macular degeneration) patients whose sight has improve considerably since stem cell treatment and whose quality of life improvements are off the charts.
In retrospect, I hope they haven’t. If they have seen all of this evidence and come so close and then still turned away is as bewildering to me as it is tragic. Sigh… I wish I could help them…maybe I still can. I don’t know… Perhaps they will see this and read all of the information available. I’d like to help if I can…
“But few have spoken of the actual pleasure derived from giving to someone, from creating something, from finishing a task, from offering unexpected help almost invisibly and anonymously.” Paul Wiener quotes
You can lead a horse to water, but you can’t make him drink.
[something that you say which means you can give someone the opportunity to do something, but you cannot force them to do it if they do not want to - Cambridge Idioms Dictionary, 2nd ed. ]