Bertrand was the first person in the world diagnosed with the rare disease N-glycanase (NGLY1) deficiency. In the past 2 years, nineteen additional children have been identified, four of which are deceased.
NGLY1 is degenerative and almost certainly fatal, without a treatment or cure. Symptoms of Bertrand’s condition include seizures (myoclonic, astatic and absence), movement disorder, and neuropathy. For epilepsy alone, Bertrand has tried 6+ seizure medications, ACTH, prednisone, and the ketogenic diet.
It is our hope that the neuroprotectant properties of cannabis may help with the management of Bertrand’s epilepsy and neuropathy. But, our greater hope is that cannabis will help children and adults with a variety of symptoms, with or without diagnoses, to have a greater quality of life.
In his short life, Bertrand has already made the world a better place. We couldn’t be more proud of our son.