While receiving stem cell therapy for Optic Nerve Hypoplasia & Septo-optic Dysplasia (ONH-SOD), Marina Alonzo was able to see color in her completely blind eye for the very first time. With both eyes, she was also able to read and recognize the colors of a green sign some 40 feet away. These improvements are not the first for Marina, and the family is certainly hoping they are not the last.
For some background on Marina’s condition and issues with ONH-SOD, her mother, Debbie Alonzo, provided us with a very detailed account:
“My daughter Marina was born with a midline brain defect called Optic Nerve Hypoplasia. At about 3 months old her father and I noticed that she was not making eye contact with us and seemed to almost look right through us. Her eyes were also always moving or rolling without any control. At 5 months the doctor referred us to a neurologist for immediate MRI tests. That is when we found Marina had very few optic nerves, did not have a septum pellucidem and had mild thinning of the corpus callosum. We immediately took her to CHLA (Children’s Hospital of Los Angeles) where they were doing a study on ONH-SOD to find out why this defect had tripled within the last decade. It was with great relief to us that Marina would have usable vision and had a mild case of ONH compared to many others. Her brain was deciphering color, images and everything visual perfectly.”
Marina seeing colors with her right eye for the first time
Besides the visual problems other symptoms were affecting Marina as well. Her mother told us that “She has low muscle tone, balance problems, and no sense of smell. She was also a 30 pound baby at one year old and when we went to Thailand this last May of 2015 she weighed over 250lbs. We found that her body was not metabolizing the T4 stored in her brain and her cells were starving thus storing fat no matter what.”
As we’ve detailed before, our comprehensive program we aims to not only correct the symptoms of the condition in question, but also systemically treat any other issues a patient may be having through our functional medicine approach. Her mother detailed this benefit of the treatment as well:
“With appropriate diet based on her issues and exercise we have now found that she can lose the weight and her cells are finally in healthy condition. At Better Being Hospital through a functional medicine doctor – Dr. Torsak we found out what was happening. After 14 years in the US being told it was ‘my fault my daughter was so heavy,’ she finally understands that her body can’t metabolize carbohydrates and sugar and eating them was making antibodies that actually made her cellular function very poor and unless she changed her diet the stem cells would not be able to multiply into healthy cells.”
Marina was first treated with stem cells in April of 2011. At that time Marina’s vision was about 20/200 in her right eye, and no vision in her left. She was fortunate to be in a study on ONH and stem cells through Beike Biotechnology and the Children’s Hospital of Los Angeles which followed her progress before and after her first stem cell treatment. “I feel fortunate because we had excellent reports to prove her vision had doubled in her right eye. At 9 months post-treatment she was testing 20/100 and her left eye had some light perception which amazed her local eye doctor. Her nystagmus, and her astigmatism were both greatly improved and her corrective lenses had to be changed for the better.”
When asked what led to the decision to seek stem cell therapy, Debbie Alonzo noted that it was mostly word-of-mouth. She knew two families in her area who had used Beike Biotechnology stem cells for Leber Hereditary Optic Neuropathy (LHON) as well as a boy who had suffered from Cerebral Palsy. Both of these families had seen some great improvements and this gave Debbie the confidence she was looking for to go abroad since the US has yet to have a viable treatment option for these chronic conditions. On top of this, she notes the compassion and timely, well-informed responses from her representative that allowed the family to make an informed decision.
Lastly, Debbie notes it was a “sooner rather than later” type of decision as well. “We know many families that have been multiple times and continue to see improvement. If I could go back, and for all those people reading this, the sooner the better! We have seen children that started stem cell treatment before 6 months old, and have had several treatments (mainly for Cerebral Palsy) and if you compared those children to the ones that went after age 5 it is completely two different situations. I can’t say enough about this.”
This is when the Alonzo family decided to save for more stem cell treatments 4 years later. The first time they fund-raised through donated money, speaking engagements at several non profit clubs, TV interviews, newspaper interviews, a golf tournament, estate sales, and other means. This time around after waiting a few years it was a bit less stressful.
“Thailand was an incredible experience; we stayed in an apartment-type setting off hospital grounds that made us feel more ‘on vacation’ than ‘in the hospital.’ The nutritionist, doctors and staff all worked with Marina’s specific issues and helped her in all areas.”
This time before Marina left for Thailand, “she could see not only light in her left eye but was learning to distinguish color, it felt like a true miracle to see these results so quickly and her vision in her right eye already seemed to improve 10 times! She could see a 6 inch wide brightly lit sign from 45 feet away. Before this set of stem cells she would not have been able to see this from even 10 feet away. Again, we were amazed.
“Marina would be walking outside and say, “Mom, I just feel like I can see better.” This is very hard to understand from her perspective as it will be for anyone who could never do certain things and now they can. We did not realize that we had to train her brain to see color in her left eye or see anything for that matter, it never could and now it could and like anything new the brain has to be taught. This is the same as her balance and smell. We did not know that her brain/body could learn how to do these things and that it must be taught!
“The excellent physical therapists, occupational therapists, acupuncturist, nutritionist, plus hyperbaric chamber, and rTMS magnetic stimulation all working together for Marina made a huge impact. I think the specific food plan and supplements were a huge part of her body accepting the stem cells and producing more and more good healthy cells to go right where they were needed with the prodding of the exceptional therapists and doctors to “help” the new cells.”
When asked about their overall goal or expectations, Marina’s mother noted that they “specifically want 20/40 vision in her right eye since those are the qualifications to drive. We also hope for usable vision in her left eye, thyroid and weight resolution, sense of smell, and her balance function improved if not completely healed.”
The family plans to wait 6 months before going back to their low vision specialist to recheck Marina’s vision, since they understand that the cells will continue to show results for about one year. As for Marina, she is now collecting key chains because she believes that she will be driving at the age of 16.
Other plans include continuing Marina’s physical activity at home, and working with a functional medicine doctor in the Los Angeles area. This doctor can continue to explore any breakdowns in her cellular function and help them continue on the best diet, supplements and exercise program for her specifically.
When asked about Debbie’s recommendations for those considering stem cell treatment for ONH-SOD, she says that “I would recommend finding a functional medicine doctor even before you go to Thailand to get your body in the best possible condition to accept the stem cells and allow them to reproduce as healthy as possible. We are also going to be working with a vision specialist that will help train her eyes to see depth perception, color and letters in her left eye and hopefully get that eye functioning to its highest potential.”
The family is very excited about the potential improvements and have already expressed interest in coming back for another treatment. However, they know they need to let the 400 million adult mesenchymal stem cells do their job first and then see.
“Our goals have been met: better balance, she can smell, and Marina can see with her left eye and is already seeing SO much better in her right eye, even before we left Thailand! We can not wait to see what the future holds for our beautiful sweet Marina.”
For more information about stem cell therapy for ONH-SOD or any other optic conditions