"They call it a really good placebo effect," Lawrence said. "Whatever, if it's a placebo effect, I want some more."
By Erica Molina Johnson / El Paso Times, Posted: 08/07/2009 12:00:00 AM
Lawrence Brown III looks at the number "10" on a family laptop and tells his mother Georgina Brown what the number is as part of a daily exercise to see if his sight is improving. (Ruben R. Ramirez / El Paso Times)
EL PASO -- Lawrence E. Brown III easily spotted and then picked up a bottle of sunblock a friend dropped Wednesday afternoon.
For most people, it is insignificant.
But for Lawrence, 16, who has been blind since birth, it was an exceptional moment.
For him and his family, a gamble on a Chinese stem-cell procedure to treat his blindness is beginning to pay off.
The procedure is not available in this country and is met with skepticism by many American doctors. No treatment exists for Brown's condition, said Dr. Michael Repka, pediatric ophthalmologist at Johns Hopkins Hospital in Baltimore.Brown was born with optic nerve hypoplasia, an underdevelopment of the nerves in his eyes.
Before his family left to Qingdao, China, on June 20, his vision was little more than limited perception of light, color and shadowy masses.
He and his mother and sister spent six weeks in China so that he could undergo nine stem-cell transfusions intended to stimulate the growth of his optic nerves.
The cells were delivered intravenously on his arm or injected directly into his spine. He received acupuncture and electric wave therapy to help stimulate the cells' work.
"I didn't expect for it to go as far as it has, and I'm just wondering what the heck is going to happen in the next nine months," Lawrence said Wednesday.
He jokes that he is part Chinese now that he has received the transfusions.
Doctors in China told him the stem cells would continue to do their work over the next nine to 12 months. He is exercising and taking vitamins to help the umbilical stem cells have the greatest effect possible."Every day for the next year, every time I wake up, I wonder if something new is going to happen," Law rence said. "Every day holds a new possibility."
To measure his progress, Georgina A. Brown shows her son flashcards.
On one card, Lawrence saw six blobs a few weeks ago. Now, he can see six circles.
On another card, a nearly 7-inch-tall letter L that he first saw in China now seems a little too big when held about seven inches from his face.
He can now make out a nearly 5-inch-tall letter B from about the same distance on a computer screen.
His mom quizzes him often with the cards or other objects that happen to be around.
Lawrence has always read in Braille and is just starting to learn the letters by sight.
He is spotting colors more easily and is beginning to discern the different textures and angles of objects.
And his nystagmus, or rapid and involuntary eye movements, has lessened dramatically.
"I didn't expect this (all improvements), but I hoped for it," he said.
He hasn't yet been evaluated by a doctor to gauge his improvement, but he said he didn't need the professional confirmation to know the procedure is working.
The Browns said they're not optimistic that Lawrence's local doctor will declare the procedure a success.
"There's a running joke (in China) with the staff. They call it a really good placebo effect," Lawrence said. "Whatever, if it's a placebo effect, I want some more."
While in China, they tried to make the most of the new cultural experience.
With the help of a translator or simply through hand movements reminiscent of a game of charades, the family navigated their way through markets and parks and visited a temple, zoo and aquarium.
They shied away from eating much meat because it often appeared uncovered and not refrigerated at neighborhood markets.
At street markets, they saw displays of animal internal organs, roasted dog heads, bugs on skewers and stinky durian fruits.
Georgina Brown said it was much like being on Anthony Bourdain's "No Re servations" television show that appears on the Travel Channel.
"We were going to eat bugs, but I couldn't do it," Lawrence said.
Georgina Brown said she was excited that her family could have that cultural experience.
"I think it gave them a different outlook on the culture itself to know how much we have here and how fortunate we are," she said.
They learned a little more about the world than many visitors to China by socializing with other families at the hospital who traveled there from countries such as Libya, Switzerland, Ireland, England and Romania.
"This experience also gave my children an experience to see all the different children. There are children with SMA (spinal muscular atrophy). Children who can't see, can't talk, can't walk."
The Brown family returned from China on July 31. Lawrence has spent all day every day this week at band practice at El Paso High School. He will start his senior year of high school there in two weeks.
Meanwhile, the family is looking for someone to continue his acupuncture treatments in El Paso. They're also in the hunt for a power converter that will allow them to plug Lawrence's electric wave therapy machine into American power outlets.
He is hopeful that he can return to China next summer to undergo another round of stem-cell transfusions.
"There is nothing that I'm going to go through that I can't handle," Lawrence said. "You have to look at life that way, or else you can just sit and cry in a corner."
via Stem-cell therapy shows results - El Paso Times
Posted 6 May, 2009 in Optic Nerve Hypoplasia | Stem Cell Research Helps Blind Girl See
Hayley Pelletier had been legally blind since birth due to her Optic Nerve Hypoplasia. However, thanks to the wonders of stem cell research using Adult Stem Cells, these days Hayley can now see and in the words of her mother “Basically, her whole quality of life was just bumped up 110 percent.”
No Medications, No Treatments, Nowhere To Go
Before the stem cell research that changed her life occurred, Hayley was learning how to read Braille and how to get around with a cane due to the Optic Nerve Hypoplasia
, a leading cause of blindness in children where the optic nerve fails to develop.
Until an amazing new stem cell treatment developed in China using cord blood stem cells, there was no drugs, no treatments that could improve Optic Nerve Hypoplasia.
Cord Blood Stem Cells- Only Treatment Available
Hayley and her mother Heather went to China for the stem cell treatment in November 2008. And the results have been amazing. Before, Hayley could barely only make out the difference between light and dark, but now-
- She can now draw pictures of people on paper
- She can identify colors easily
- She can watch television from 3 feet away.
From the stem cell article
:“It’s been incredible,” Pelletier said. “Basically, her whole quality of life was just bumped up 110 percent. She’s so much happier.” Her self confidence has soared, too. Pelletier managed to say a few words at a Lions Club banquet, but she admits she was intimidated by the hundreds of people in the room. Hayley wasn’t. “I brought a different child home from China. She stood on a chair and told them all about her experiences there,” said Pelletier, astonished. “Then she thanked them for honoring her with their support.”
Hayley Joins the Stem Cells for Optic Nerve Hypoplasia Club
Hayley now becomes the latest addition to our “club” of children who have been to China for stem cell therapy for their Optic Nerve Hypoplasia and the closely related Septo-Optic Dysplasia and then come back to the United States, UK and Canada with better vision and other benefits to their development.
Before that there was Jakob Bielski
Just last week, we added Dakota Clarke
, her mom said “It’s been worth every single penny to see the changes in her.”
A few weeks ago we added Macie Morse
who can now see well enough to drive after her stem cell therapy.
And before that Coby Fend’s
mother said ““We are talking about going back — we’d almost be crazy not to, because right now it’s the best thing going in the entire world.”
And we also had Connor Corkern
- He’s doing great. He is doing wonderful. It’s like we’ve got a totally new baby, Coye Corkern said
We had Cameron Petersen
- Grandma Petersen said “There was nothing for Cameron before this treatment. Now, his world is limitless.”Lydia Black
- From her father - “the treatment is already having a huge effect on her life, and he is glad that she was able to receive stem cell treatment in China. ” Lydia Olmstead and Rylea Barlett
- “After her second treatment, we started to notice a change,”Savannah Watring
- “She said hello to herself in an elevator (after seeing her reflection). It blew everyone away. We weren’t expecting that.”Xavier Carballo
Xavier’s ophthalmologist, Dr. Jack Guggino of Tampa, said he did a baseline exam on the boy before the trip to China and after his return. He said before the treatment Xavier could only detect hand motion at 1 to 2 feet, and after the treatment he could count fingers at 3 to 4 feet.
“As far as Xavier is concerned, there has been definite and measurable improvement, neurologically and ophthalmologically,
” Guggino said.
If you or someone you know has a similar condition or perhaps another disease, please go to our Repair Stem Cell Institute website and we will provide stem cell treatment information
Stem Cell Research Video
Punta Gorda, Florida- This past Sunday, March 22, 2009, a good time was had by all at a event organized by the Medical Awareness Association
. This fun time was a gathering of mostly children with Optic Nerve Hypoplasia
and their parents who had been overseas for stem cell treatment in China using Cord Blood Stem Cells.
One of the highlights was a speech given by Macie Morse, the 16 year old girl who was blind because her optic nerve failed to develop. Recently, Macie returned from China where she received Adult Stem Cells. Today, Macie has her learner's permit and is driving!! Don't believe me? Have a look at this stem cell video
Before the stem cell treatment in China, there was no treatment, no cure for Optic Nerve Hypoplasia. Patients with this condtion were destined to a life of blindness. Now, the word is getting out- and more children like Jazmin Palmer
with this condition are going to China to get this treatment.
Why isn't it available here in the United States? The Medical Awareness Asscociation, started by Carol Petersen, the grandmother of Cameron Petersen who was treated and helped for his Optic Nerve Hypoplasia last year, is trying to make this happen here. The stem cells used are cord blood stem cells- there is no controversy surrounding them. NO reason why this shouldn't be available now.
Here is their mission statement of the Medical Awareness Association:
We are, each one of us, Americans with conditions our US doctors have told us were untreatable, merely manageable, degenerative, unheard of, regressive, terminal or orphaned. We have witnessed the opportunity presented by adult umbilical cord and cord blood stem cell therapies outside our borders.
Many of us have questioned these terms by which our doctors labelled our conditions. Many of us have received stem cell therapies beyond the acceptance of the US medical tradition. We have accepted the risks inherent in our choice. We have also accepted the possibility of seeing "regression" itself regress.
We call on US researchers to actively pursue stem cell therapies while not belittling our choice to actively pursue therapies for ourselves internationally. We call on US researchers to engage us. We call on medical providers to not limit our treatment in US medical facilities because of our choice to receive stem cell therapies beyond our borders. We call on the press to include our perspective in their portrayal of stem cell technologies.
Stem cell therapies, even while exploratory, are gaining ground quickly. We are ultimately, and immediately, the intended beneficiaries of these therapies. And we are being forced to travel thousands of miles to foreign lands for any hope of benefit. We believe these therapies are ethical, immediately available and present no undue risk-save the journey we are forced to make to receive them. Please join us in our cause to increase exposure of these therapies and rush research into Stateside acceptance of adult stem cell therapy today.
There are quite a few groups sprouting up like the Repair Stem Cell Institute
and this Medical Awareness Association, largely ignoring the debate of adult stem cell research vs. embryonic stem cell research because they realize that adult stem cells can be used now! They just can't be used in the United States because the FDA is treating Adult Stem Cells like a new drug. That is the reason these children in the video had to go to China for a safe and effective treatment with little to no side effects. It isn't Obama, it wasn't Bush- it is the FDA!
The original article on the stem cell gathering here
Punta Gorda, Florida, March 22, 2009
- There will be an Adult Stem Cell rally this Sunday at Gilchrist Park on Charlotte Harbor in Punta Gorda from 1pm- 5pm. The goal is to raise awareness of how Adult Stem Cells are helping people in the other parts of the world and to help bring Adult Stem Cell therapy to the United States. Attendance is FREE.
This rally will also act as an "Optic Nerve Hypoplasia Family Reunion" as well. It will unite ONH patients in the United States who traveled to China for Adult stem cell research and therapy. Until the stem cell therapy in China, these children had no options for treatment and were destined to a life of blindness. However, thanks to the Adult Stem Cells, these children can now see better and have a better quality of life. You can find their individual stem cell stories here
This is from Carol Petersen's Stem Cell Aware
website, one of the organizers of this talk:The words "Adult Stem Cell" are no longer 'dirty' words. Adult stem cell therapy, with roots tracing back to bone marrow transplants in the '50s, is coming into its own. Available outside the USA for several years now, an ever-growing body of US residents travel to distant locations to receive these treatments.We are a body of patients who have chosen to make this journey and receive these treatments. We have not been scammed by hucksters in foreign lands and we were not subjected to bizarre treatments. For many of us our only option given was to sit at home and suffer. Adult stem cell therapy has offered us the chance to see some improvement in our condition.We recognize that this is no cure. But improvements in quality of life are valuable nonetheless.If you are an adult stem cell patient and wish to join our organization please submit an email to us.
Everybody is welcome. The doctors from China responsible for this treatment will also be there. Some of the older children helped by the stem cell treatment will give speeches. Therefore, if you are in the Florida area and wish to learn something new and meet some great people, get down to Punta Gorda on Sunday. You can contact Carol Petersen for more information or if you want to join their group at email@example.com
Stem Cell Treatment and Therapy Talk in DallasDallas/Ft. Worth Area, March 21, 2009
- Preston Walker wanted everyone to know that Dr. Neil Riordan, Ph.D.,the CEO of Cell Medicine in Costa Rica, will be giving a talk in Dallas/Ft. Worth, Texas this Saturday, March 21 between 3pm and 6 pm at the Westin Hotel.Preston Walker and Richard Humphries
(who will both be in attendance at the Westin) were the two (now famous) Multiple Sclerosis patients who made the trek from the United States to Costa Rica for the Adult Stem Cell research
and treatment last year.
Here is the latest update from Preston Walker himself:
"Richard Humphries and I went to Costa Rica in May 2008 with relapsing-remitting MS (Richard had secondary progressive MS) . At the time I suffered from fatigue, depression, a cognitive "cloud" and a staggered walk.
Since the treatment, I've had one poor day with the depression returning with a vengeance!! That was ONE time.
I recently found this site and have been reading feverishly.
The only thing still lingering is an occasional "cloud" moment. the cognitive cloud. I want to say it doesn't exist because it is normally just a faint memory, but it's still there. I have RRMS. Richard had SPMS. Dr. Riordan believes his MS may have been reduced to RRMS because of this (stem cell) treatment."
Since Richard and Preston went to Costa Rica, many others, particularly MS patients from Texas
have followed in their footsteps to reap the benefits of Adult Stem Cell research outside of the United States.
Both Preston and Richard will be attending the talk at the Westin Hotel. For more information on the event at the Westin, or if you are not in the area and wish to correspond with Preston and Richard you can email Preston at firstname.lastname@example.org
You can also email Richard at email@example.com