One can only imagine what went through the minds of the then 16 year old Laura Jackson and her parents Daryl and Melody as they arrived in Beijing, China. The clinic with its red and gray stones situated on a busy street in Beijing was to be Laura’s home for the next 32 days as she underwent the controversial stem cell therapy. Did their thoughts travel a year back to that fateful day in May 2003, where this odyssey started or did one of them utter the famous words from The Wizard of Oz “Toto, I have a feeling we’re not in Kansas anymore”.
On May 13, 2003, Laura Jackson’s day probably began like any other day in the typical life of a 14 year old. She was trying out for the cheerleading squad at her school, Livonia Stevenson High School later that day. One wonders if she hesitated as she walked out of the front door for the last time before the horrible mishap that turned the young bubbly teenager into a quadriplegic. The accident happened during the tryouts as Laura attempted a backward somersault, a routine that she had probably performed dozens of times before. On that fateful day, something went wrong; she landed awkwardly on her neck, breaking it between the c-1 and c-2 vertebrae permanently damaging her spinal cord. When she came to in the hospital, Laura could not move or breathe; she was paralyzed from the neck down. She was now a c-2 paraplegic incomplete. Her spinal cord was damaged and once the neurons in a cord are damaged they are unable to repair themselves. The implication is that the brain is unable to communicate with the neurons below the damaged area which in Laura’s case meant the loss of most of the sensation and function to muscles in her arms, legs and diaphragm (important for breathing). At 14 years old Laura Jackson was forced to come to terms with the fact that she would never be able to walk, move or breathe on her own again, a fact that she refused to accept. So, she and her father started researching cures or treatments, trying to find anything that would make her quality of life better.
It was then that they found out about the promise of stem cell treatments. These treatments are touted as having the potential to change the way people regard debilitating diseases. Stem cells are said to have the ability to differentiate into whatever required cells that are needed. In the case of spinal chord injury, the stem cells are supposed to aid in the regeneration of neurons in the damaged spinal cord effectively reestablishing the link between the brain and the lower extremities of the body. To the Jacksons, this meant that there was a chance that Laura could walk again. Given the fact that stem cells have been used successfully in the United States for bone marrow regeneration, their use in spinal cord regeneration seemed like a feasible option. At first they tried to locate local treatment centers, but they soon run into the bureaucracy in the United States that governs drug research and drug manufacturing. This bureaucracy was even more heightened since the therapy involved the controversial stem cells. The controversy originates from the fact that one of the sources of stem cells was aborted fetus and abortion is a controversial subject. Most patients find all the bureaucracy frustrating, they argue that the benefit of the treatment out weighs its negativity, so most patients would go ahead with the treatment if it was made available. Since the treatment is not available in United States, patients are forced to look elsewhere.
Knowing that there wasn’t any hope in Michigan or even in the United States, we were forced to look into other countries” Laura said in a statement she read before the Michigan legislature.
After a long search the Jackson’s found Dr. Haung and his Clinic in Beijing. Dr. Hongyun Huang is the Chief neurosurgeon at Chaoyang Hospital in Beijing, China. He did most of his research on Olfactory Ensheathing Cells (OES) stem cells Rutgers University in New Jersey working with Dr. Wise Young for three years before returning to China. He took is new research and knowledge back to china where the bureaucracy that holds back Stem Cell Therapy in the United States is non existent. As a result he runs one of the most talked about Stem Cell Therapy Centers in the world. Dr. Huang’s procedure called Olfactory Ensheathing Glia Cell (OEG) transplant has been well received by the community of patients willing to venture to his clinic for this costly procedure. The Jackson’s were no exception.
“Whatever it costs to get her walking will be worth it” her father said. Through fundraisers and dipping into their savings, the Jackson’s were able to come up with enough funds to cover the $40,000 needed to fund their trip. Once the decision to travel to China was made, the Jackson’s inadvertently joined the growing number of people who are willing to travel abroad in search of treatment. They were becoming medical tourists, more specifically stem cell tourists. Most medical tourists travel away from their homes to far off destinations to have procedures done that are usually elective procedures that local insurance companies do not cover and are therefore cost prohibitive, treatments that do have yet to meet the Food and Drug Administration’s approval, or treatments that the patients do not qualify for in the United States. With the popularity of this globalization of healthcare medical tourism has been listed by some countries as a national industry. This industry however has some risks associated with it, namely the legal and ethical ramification. The industry is growing so fast that the medical community is having a hard time grasping the implications associated with it.
Most of the world’s medical community is in quandary and it was no surprise to the Jackson family that one of the questionable stem therapy centers was Dr. Huang’s clinic. His approach to treating patients defies all western convention. For example, he does not match tissue type with his patient’s tissue to those of the donors, nor do his results have any controls to compare with to demonstrate the efficacy of his treatments. Then there is the lack of data on the long term effects of the treatments which some scientists speculate that the treatments may have dire consequences like cancer. Daryl Jackson however still feels strongly about what needs to be done. “There are more animal and mouse studies than the world can take. We are ready for the real thing.” The real thing however was not coming along fast enough in the United States, so the Jackson’s went ahead with their planned trip to China.
After a difficult and uncomfortable 20 hour trip for Laura, the Jackson’s finally arrived at Dr. Huang’s clinic. Laura filled with excitement and anxiety was taken aback by the hospitals condition, “I was a little scared because the hospitals didn’t have all the amenities I needed”. Despite that minor setback seven days later Laura underwent the 8 hour surgery.
The surgery was considered routine to Dr. Huang, having performed more that 600 such procedures before. The procedure entailed putting the patient under general anesthesia. The doctor then exposed the area in her back where the stem cells obtained from the olfactory bulbs inside the noses of fetuses would be injected. The doctor then injected the stem cells using an ultra-fine needle into the areas directly above and below the damaged area of her spinal cord. The premise is that once these stem cells come in contact with the damaged section, they are supposed to stimulate changes within the cells of nervous system allowing them to regenerate effectively repairing the damage. In the best case scenario the patients are expected to walk again; this sentiment is echoed in the optimism of most of Dr. Huang’s patients. Laura was no exception.
“I am going to walk” Laura said after the operation with a new found resolve.
Initially after the surgery Laura noticed differences immediately. Laura who normally breathes with help of a respirator was able to stay off the respirator for 15 minutes. Years later she would say of this new achievement: “Something many people take for granted, like breathing, made me feel one step closer towards being myself” She was able to get out of bed. She was able to feel a muscle in her arm which was enough to make her believe that she was making progress under Dr. Huang’s care.
After the completion of her treatments, and back home in Michigan, the Jackson’s embarked on the expensive endeavor of continuing Laura’s healing journey. The invested in solutions and remedies that they believed would help improve Laura’s quality of life. The installed an elevator in their house, a lift to help Laura in and out of bed and various exercise equipments that is supposed to help improve her condition. The Jackson’s who are small business owners do not subscribe to a managed care insurance plan have personally footed the bill for their daughter’s recovery journey.
Laura Jackson is a now 19 year old with a bright smile, continues to work hard to develop muscle tone by doing physical therapy 5 times a week. She is now able to stay off the respirator for 2 hours. She has also gained muscles in her neck and shoulders which has given her independence. When asked about Laura’s improvement from the Stem Therapy, her father responded “Was all of it from the therapy? No. Was most of it? Yes.” That was good enough for them.
To the Jackson family waiting for the United States medical community to come up with a cure was not an option becoming stem cell tourists was a necessity. This year Laura has taken on the Michigan legislature pushing for the end on the ban on Stem Cell research that ends in the destruction of human embryos. Laura’s feels that the cloning human’s is not the answer to obtaining stem cells but embryonic stem research is the answer. In her statement to the Michigan legislature Laura’s says that she is not in agreement with “those who say embryonic stem research is not pro-life. This research represents the true pro-life position because it could save human lives and eliminate human suffering”. Her upward battle to get better has now reached a plateau and she is hopeful that something new will come down the pipeline. She and her father Daryl continue to scour the internet, journals and any information sources for advances in spinal cord injury treatment that is coming down the pike. They will do whatever they can to help Laura fulfill her dream to walk again.
Courtesy FDAapprovedRX.com
