Provided by Michelle’s family
Michelle is our only child. She became sick at 15 months old following an encephalopathy that destroyed her health. Michelle is now 23. She’s been diagnosed with severe autism (non-verbal), intractable grand mal epilepsy, Crohn’s disease, spondyloarthritis, uveitis, legal blindness, osteoporosis, severe deformity bilateral (feet bones), stage III steatohepatitis (liver disease) and severe static encephalopathy.
When Michelle was 10 years old she had her first grand mal seizure. It was so strong that it caused her to drop straight down twisting her legs beneath her, causing a compound open fracture (bone busting right through her shin). She was in the hospital for 6 weeks following this seizure and surgery. She was put on anti-seizure medication during that time. This point was really the beginning of a worsening overall in Michelle’s health. She had trouble healing from the bone break. She continued to have severe Crohn’s, painful arthritis, painful foot deformities, insomnia, and increasing grand mal seizures. Of everything that she had going on, the seizures were the most terrifying to us. We took her to five different neurologists to try to get her help for the seizures. All they could offer was more anti-seizure medications and brain surgery. We were told that she was at a high risk to die from SUDEP.
A few years ago I began researching medical marijuana, with an emphasis on CBD. I saw the CNN specials with Dr. Gupta and felt this was something that may be able to help. Michelle’s health was not good and continued to decline. She was on several strong anti-inflammatory drugs including Humira and Remicade, as well as very high doses of anti-seizure medications. She was feeding tube dependent yet severely overweight (steroids beginning at 8 years). She had horrific pain just to walk. She was in a wheelchair when outside of the home. It took two people to help her walk because she had to hold on. She continued to have grand mal seizures, clustering while she was sleeping to as many as nine at a time. She was repeatedly hospitalized for abdominal wall abscesses at the feeding tube sight. Her body couldn’t fight the infections because her immune system had been suppressed for so long. She continued to have seizures. She didn’t feel good. She was having horrible self-injurious behaviors because of pain. Michelle was completely debilitated at this point. None of her specialists could offer anything more for her. I had only one hope and that was to try medical marijuana. I had already been researching it off and on for several years. But I wasn’t sure where to start. I saw a presentation online from a doctor in California who was treating children with CBD, Dr. Goldstein, and we made an appointment to see her.
From the beginning of taking CBD we could see a difference. The first thing we saw was Michelle began to smile. We titrated weekly for a few months to reach a therapeutic level. The seizures began to decrease with seizure-free periods. Two months after starting CBD, Michelle began to taste food by mouth. Previously, she was feeding tube dependent with only rice crackers and water by mouth. Now she was tasting cooked food, pot roast with vegetables. Within a few months, we had her GI’s permission to discontinue tube feedings and feed only by mouth! So now Michelle was eating meat, chicken and a variety of vegetables!
Because of the constant infections, we had to consider discontinuing Humira. We stopped Humira but Michelle continued to improve with the Crohn’s disease symptoms. Although she was eating by mouth, she no longer was having chronic diarrhea. She began having regular bowel movements and still does! By the end of the first year, she was no longer showing signs of active arthritis. She began to walk more, lose weight and become very alert. She continued to have good seizure control with only occasional breakthroughs. I was able to get her into adaptive exercise classes. She lost more weight and began to improve overall. Today, she is no longer taking any anti-inflammatory medication. She is slowly weaning off of her seizure medications. Her seizures are well controlled. She had her feeding tube removed after 13 years!! Her doctors say her Crohn’s disease and arthritis are in remission. She has imaging and lab results showing her liver to be improving. She is able to sit through speech and OT therapy because her autism symptoms are lessening and she is able to participate now. She has begun using an AAC iPad device. She is happy and laughs with us. Her quality of life has improved by 1000%, and she is healing. This treatment has been a real life changer for Michelle.
We hope in 2019 we can raise enough funding to close the gap and no longer have to turn desperate families away. To give a grant to every person who applies, we need around $2,600,000.00. You read that right. 2.6 million dollars. Every dollar counts.
