Last Friday marked Madelena's three-year bone marrow birthday, and coincidentally, her 17th birthday as well.
How lucky we are to have her with us, and so hale and hearty. Madelena is a miracle, as we were able to get her diagnosis in an earlier stage of her disease, MLD, and she was able to survive the transplant process.
It has been a roller coaster ride and for a long time, we haven't been sure of her prognosis. After her transplant, she was having seizures, and an array of psychological problems from the disease and the medications she was taking. But that wasn't all, we still had to worry about the physical deterioration due to the disease. Her ability to walk and balance has been precarious these last three years, but we are now seeing steady improvement.
Madelena is determined to get better, to have a full life, and by the grace of God and some amazing support, she is living her dream.
In the beginning, she was off to a rocky start as the disease had eaten away at the white matter in her brain, and she lost many of her abilities. Her fine motor skills, which were so crucial to her creative outlets were ruined and her gross motor skills were compromised, making it difficult for her to walk and take care of herself. Madelena has been dedicated to her physical therapy exercises, and has seen dramatic improvements in her ability to balance and walk.
There has been a little extra help though. Madelena has a secret weapon in the fight against her terminal neurological disease. It is cannabis oil. A year ago, after her older sister, Tori, passed away from the same disease, and we saw that Madelena was starting to lose some of the gains that she had worked so hard to achieve, we were willing to embark on an experiment to save Madelena's life.
We had seen the research and heard the stories about children with neurological diseases experiencing great improvement with small doses of the oil of the cannabis plant. We were skeptical, of course. We researched, we spoke to experts in the field, Aaron attended a conference about cannabis, and we saw a doctor in California who was willing to support us in our search to find some means of holding on to the quality of life that Madelena had. When we elected for a bone marrow transplant for Madelena, we knew it wasn't a cure. It wouldn't reverse the damage done to her body and mind, but we did hope to stop its progression.
Her situation was dismal in the beginning. All we could see were more losses in cognitive and physical abilities. She started having absence seizures and the medication she was prescribed made her psychotic and suicidal. After a long trial period and several different medications, we decided that the cure was worse than the disease. It was better for her to have seizures than experience the side effects from the medications.
When we found that cannabis oil -- high in CBD compounds and low in THC -- could help, we decided to try it. Within a week her seizures stopped. Her personality, which had been subdued by the seizures and medication, came back, and her moods dramatically stabilized. It was a miracle. And it is not just anecdotal, we have measurable proof that since Madelena started taking cannabis oil, she has had improvements in her brain matter, as evidenced in her MRI.
Recently at her physical rehab appointment, the doctor was amazed to see that Madelena has shown improvement in her muscle tone, range of motion, balance, and gait (walking) patterns. She told us that Madelena is the only MLD patient that she has ever seen who has shown improvement, instead of steady decline.
When we told the doctor that it was due to the cannabis oil, she wistfully remarked that she wished that all of her patients with similar problems could have access to it.
Well, that is what we are working for. We have seen the benefits of this oil, and we want everyone who needs it in the state of Utah to be able to legally access it. Right now, this oil is illegal, but there is a bill in the Utah State Senate that would provide a reasonable, controlled and closely monitored way for doctors to prescribe to their patients an oil that could dramatically improve their lives. Senator Madsen (R) Saratoga Springs has sponsored a bill that allows whole plant access. That is important, because even though the oil that Madelena uses is comprised mostly of CBD, to work properly, a little THC also has to be present. Maddie has experienced no adverse effects from this oil. She takes just a few drops under her tongue or in a gelatin capsule each night before bed, and it helps her get the sleep that is so critical to her functioning.
It was nerve wracking to go public in support of this bill, but we can't deny the improvements in Madelena's life, and we can't be silent about it. As the stigma surrounding the cannabis plant fades, and as people research the actual benefits of the plant, we see a bright future for the many sick and afflicted patients in our state that will benefit from the passage of this bill into law.
Maddie got lucky that we were able to get her diagnosis relatively early and try to stop it before it killed her. But she was in a miserable state before we found that cannabis could help her. Thank God for the brave souls who went before us and pioneered the use of this plant for good health.
Please support this bill and contact your district's senator to let them know that this bill should pass.
This is a link to the actual bill: http://le.utah.gov/~2015/bills/static/SB0259.html
This is a link to a website to help you find your senator: http://le.utah.gov/GIS/findDistrict.jsp
This is a link to a site that shows evidence to the benefits of the cannabis oil: http://www.safeaccessnow.org/medical_cannabis_research_what_does_the_evidence_say
Here is the link to an excellent graphic explaining the bill: http://le.utah.gov/interim/2015/pdf/00005166.pdf