By now, I'm sure that all of you know that Abram has a rare gene mutation called UBE2A Deficiency Syndrome. For Abe - this has caused him to have brain abnormalities (cortical dysplasia), a large pineal cyst in the center of his brain, hypotonia, fused (horeshoe kidneys), funky big toe nails, epilepsy, autism, intellectual disability and he is non-verbal.
We are lucky in the fact that we were able to try CBD oil (Haleigh's Hope) after other pharmaceutical medications had failed him. We are lucky that we have found something that not only increased his cognition but helped his seizures immensely... we are currently over 2.5 years seizure-free because of Haleigh's Hope.
In advocating for medical cannabis in our state, we are often told that we should "wait for FDA Approval" for our son's treatment from many doctors as well as our law makers.
Many people don't understand the gravity of rare disease but this infographic really brings some important facts to light!
When rare disease impact more people than AIDS and Cancer combined - yet only 5% of rare diseases have an FDA approved drug for treatment, families like ours don't have the time to wait.
I truly hope that Iowa's Medical Cannabidiol Board and the Iowa Legislature do the right thing for their own rare patients. We need to expand the conditions for our medical cannabis program in addition to increasing or removing the THC cap all together.
When your child or loved one has something rare, with little help or understanding of how to help, any treatment that can improve the quality of life should be made available to those who need it most.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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