We lost our sweet precious Makena at the young age of 17 in February, 2016 due to complications arising from pneumonia. Up to this point, Makena was a fighter and endured battles everyday of her life that kids should not have to face. Makena suffered from daily grand mal seizures, she was trapped in a body that she could not control, and she couldn’t communicate with words that everyone could understand. Makena was however, completely aware of her surroundings and very cognizant of what others around her were saying or feeling. Makena was a perfect healthy happy baby when she was born on the morning of October 11th. It wasn’t until we gave her her 2 month vaccinations (which most parents believe will protect their children) that her life completely changed. Makena had a severe reaction to her Hepatitis B vaccine which left her brain injured from the thimerosal (mercury) which is used as a preservative in the shots. As a result, Makena began having over 60 seizures each day at only 3 months of age.
As a new mom, I trusted the doctors who were working on her and the advice they were giving me. I never questioned their medical advice, at least not in the beginning. Over the next several months, Makena was put on many anticonvulsants, of which none of them worked, or any combination of them. I found information on Vitamin B6 and the natural treatment for seizures. No neurologist would support my attempt to try this with her. So, I found a group of parents online who I turned to in order to get the correct dosage and purest brand to try with her. After only one day of giving my daughter 150 mg of vitamin B6 (split up into 3 doses of 50 mg) she was down to under 10 seizures (from over 60) over night. The neurologists told us that it was a coincidence and that this would have happened even if we didn’t give her the vitamin B6. After doing some research and talking to other parents who were also doing vitamin B6 with their kids, I learned of a neurologist who was studying pyridoxine dependency and seizures, Dr. Sidney Gospe. I reached out to Dr. Gospe, who was at UC Davis (he’s now at Seattle Children’s Hospital) at the time and spoke to him about Makena and how she responded to the vitamin B6. He thought it was worth checking her out to make sure she was not indeed b6 dependent. We flew up to UC Davis to have her tested. We found that she was not B6 dependent, but instead was B6 responsive, meaning that her body responded to the vitamin as a natural anticonvulsant. Since learning that she was not B6 dependent, I decided to try weaning her off the vitamin B6 to see if her seizures would increase again. I was happy to find that her seizures never increased past the 10 or less per day after weaning her off.
Over the years, I explored many alternative treatments with Makena that I felt would give her the best quality of life. BOWEN THERAPY: I did Bowen Therapy, a soft tissue manipulation therapy that was founded in Australia. We did this to help relieve her tight muscles and tendons that resulted from her daily seizures. We found that it was also very relaxing for her.
HYDRO-THERAPY: I did hydro-therapy, or physical therapy in a pool with the water temperature at 96 degrees. This too helped with relaxing her muscles and allowing the water to help stretch, as well as provide another form of therapy to help with circulation, lung expansion, as well as giving her a pressure free environment for an hour. Makena loved being in the water, and enjoyed floating, and being in the sunshine.
ACUPUNCTURE: I did acupuncture, and specifically scalp acupuncture which helped with her seizures, as well as the tightness she would experience in her lower extremities from the seizures.
AROMA THERAPY: I did aroma therapy with Makena. We found after trying the numerous anticonvulsants, that Makena lost her smile and her startle reflex. I was introduced to Young Living Essential Oils and spoke with a representative about Makena’s issues. They recommended 4 specific aroma therapy blends, and specific locations to rub the oils on her body. Within three weeks of doing these aroma therapy oils, Makena’s smile came back as did her startle reflex, and tickle reflex. It was amazing to learn how powerful massage and essential oils could be.
HIPPO THERAPY: I learned of Hippo Therapy (Greek for horse therapy) when Makena was only 2 years old. We took her every Thursday down to San Juan Capistrano to the JF Shea Therapeutic Riding Center for nearly 13 years. She loved the horses and loved the physical therapist who was working with her. Unfortunately, Makena’s curve in her back became increasingly worse, which then increased the concern of her physical therapist and the thought that continuing this weekly therapy could create further harm to her curve by continuing. Therefore, after 13 years, we had to say goodbye to our weekly horse therapy.
STEM CELL THERAPY: I did stem cell therapy with Makena in hopes that it would stop or decrease her seizures. We flew Makena out of the country as stem cell therapy was not legal or allowed here in the states. Over the course of three years, we did six stem cell treatments with Makena. We noticed a new clarity with her after each treatment. We saw a decrease in her seizures, we also began to see Makena express more joy and smiles after each treatment. Makena, I believe has always been completely cognizant of everything happening around her, but it appeared that she was even more aware and cognizant after each treatment we did with her. I would have continued these treatments with her, but our financial resources became limited where we could no longer afford the treatments.
CBD THERAPY: I began giving Makena CBD daily. Upon beginning this therapy, we saw that her seizures disappeared almost completely, with the occasional seizures that would pop up if she got sick or with the monthly hormonal shifts that would bring them back. We also noticed that there was a significant change in her muscle tone. She was more relaxed and her therapists noted that she was easier to stretch and seemed more relaxed. There is much controversy regarding this treatment as many people do not understand the benefits of CBD and the absence of THC (the substance in marijuana that produces the euphoric feel.) CBD does not contain any hallucinogenic qualities whatsoever. But the benefits on decreasing seizures and increased muscle tone are amazing. Many cancer patients are even using it and finding that their cancerous tumors are becoming necrotic to the surprise and shock of the treating oncologists. There are many benefits to this herb, and I hope that in time it will become more recognized as a valuable treatment for many conditions throughout the United States.
My hope by developing Makena’s website is twofold, one to bring more awareness to the possibilities of adverse reactions to vaccines and hopefully educate parents of the risks so that they may make an informed decision regarding their own children and secondly to bring increased awareness to the many alternative therapies available to help your loved ones who have suffered any injury or illness that has turned your lives upside down. Makena, over her 17 years has taught me so much about the benefits of alternative therapies and the combination of them. It can be very daunting as most insurance companies do not pay for these types of therapies. This is why I founded Makena’s nonprofit organization: Makena’s Ray of Hope, Inc. (www.MakenasRayOfHope.org) in hopes of helping families by providing advocacy assistance as well as relieving them of the financial burden or stress that can be overwhelming when wanting to pursue alternative or integrative therapies.
Thank you for visiting Makena’s website and taking the time to read her story. I hope that her story and pictures have made a small impact on your lives and encourage you to never give up! Please visit her nonprofit website: www.MakenasRayOfHope.org if you need help or know someone who needs help with their treatments or for a list of further resources. If you have questions regarding vaccines, or any of the above therapies or resources listed on this website, please feel free to contact us for more information. Networking with other families is critical in getting through any catastrophic injury or illness your loved one has suffered. You are not alone!