Day: March 7, 2019

Written by mom Dawn

My daughter Synthia has suffered from seizures since she was 10 months old. She is now 4 and we have exhausted every medication we could try to stop them. The neurologist said we can’t do anything else, Synthia regressed with several of the psychoactive drugs. My daughter is nonverbal, she can sit up and bunny hop to crawl but she can’t walk independently and needs total dependability.

We heard about CBD oil two years ago when it aired on the news, our friends and family called us just to make sure we saw this. I was blown away and had such great new hope. My heart was so full because it never gets any easier watching your baby have seizures all day. We called the Realm of Caring and were told that we could only get it if we lived there. So we started making arrangements to move which is very expensive. We were going to split the family and go but we heard we would be able to get it in our state (not knowing we would have to get into a study that didn’t even exist at the time). So we were sad and back to square one. We let Synthia finish out her school year at a special needs school that we love and talked about moving again.

Then we received an email stating the CBD oil could be shipped. I was so excited I cried. I called the ROC and they were so very helpful with dosing questions. Syntha went one month with no seizures, she has been very happy, laughing like I have never heard her laugh, she has more energy than before, and she has no side effects. Teachers say she is a different child. Synthia has started walking in her walker all over the place. She is blooming like a flower. God sent this to us and it is a miracle.

Written by mom Cheryl

Bradley has been taking cannabinoid therapy for about a year now. Before he started therapy, Bradley had frequent meltdowns, was hyper, made poor eye contact, and was not interested in the environment around him. Everything has improved except for he is still nonverbal. If someone walks in my back door, he hears that now and goes to see who it is (he didn’t do this before). His meltdowns significantly improved. Bradley is still very autistic but so much better than he used to be.

My family members kinda scattered when Bradley became autistic at 16 months old. It would be an inconvenience for my family to actually help. “Not my kid, not my problem” is their motto. The impact on me is huge. I’m all by myself with Bradley and every day is a struggle. This grant has helped take some stress away from me. I truly believe this therapy has helped Bradley and I can’t even imagine what would happen to him if I couldn’t give him this oil anymore.

The grant has absolutely eased my financial burden. The extra money has helped with everyday expenses, clothes, food or sensory toys for Bradley. Many businesses have special needs nights but they still charge money and you don’t know if your child will stay 5 minutes or an hour. I was able to take Bradley to one of those events. I have even enrolled Bradley in swim classes. Thank you Realm of Caring for your generosity.

Matthew has “innumerable” brain tumors from his genetic disorder Tuberous Sclerosis and has tried and failed all medications. He used to have up to 15 grand mals daily, along with every other type of seizure (he has Lennox Gastaut). He would seize for hours daily. He would regularly be in status and would require large amounts of rescue medications and/or frequent ER visits and hospitalizations. His neurologist even prescribed the medication they administer only in epilepsy units to stop status seizures for Matthew for home use. His neurologist is at a major medical center and has advised that Matthew is one of his most difficult patient’s to treat. He currently takes 5 meds in addition to the oil.

With certainty, I can say that Matthew is way more alert on CBD and has had an overall reduction of about 65 – 70% of his seizures since taking the oil. He is nonverbal, so he can’t tell us how he is feeling, but he has way more energy, is far more alert and is walking longer distances with support than he was able to. He is almost 32 years old and has been seizing daily without relief since he was 6 months old. He has multiple serious medical issues, but without a doubt, his seizure activity frames our entire lives – what we can do, when, how he needs to be supported (ie if he is having a lot of seizures, all plans are cancelled, or if he is having a bad day, do we need to carry around an oxygen tank and suction machine, which skilled person will be supporting Matthew or do we have to take time off of work and care for him ourselves, etc. etc). I am so happy for him and our family to have found a product that actually works for him. We have always tried anything that the doctor had suggested in an attempt to help him. Our doctors were all supportive of Matthew trying this new therapy.

This financial aid does allow Matthew to obtain a new treatment option instead of relying on the old ineffective ones. We have been amazed at the effectiveness of the oil. Watching him have intense and horrible seizures everyday was the worst kind of helplessness – knowing that nothing we were doing was really helping to stop them, despite being treated by world class medical professionals. His expenses for supports, medical supplies (syringes, incontinence products, suction supplies, gloves, medication copayments, lifts, slings, wheelchairs, bath seats, wheelchair van repairs, etc. etc.), paramedical treatments (massage therapy, physiotherapy, music therapy) are so incredibly high.

We are firm believers that everyone has a place of belonging in their community and have unique ways to contribute to society. Matthew lives at home. Most people with Matthew’s level of care needs live in chronic care hospitals. We couldn’t live with ourselves if that was his place of residence so we have done everything we could possibly do and sacrificed incredibly to enable him to live a “regular” life, to belong in the community as a citizen. He is forging a new path to belonging, and we hope our advocacy and other efforts will make it easier for other families to do the same for their loved one, so that heartbreaking choices should not have to be made because of a mess of ineffective policies and red tape that continues marginalize the most vulnerable of our society.