Benjamin
Share This Post
Benjamin Wann was diagnosed with Epilepsy at three years old, after multiple seizure types from myoclonic to tonic clonic lead to status epilepticus. He had to quickly learn to walk again. The seizure types would change over the years, and a battle over pharmaceutical side-effects made learning extra difficult. Eventually, tonic clonics would once again lead to non-convulsive status epilepticus stealing Ben’s ability to speak overnight at nine years old! After lots of speech therapy he learned to speak again!
By age 13, Ben would be diagnosed with a point gene mutation called GRIN2A (De Novo), but gave the cause of his epilepsy. After a nine month break from all pharmaceuticals to give Ben’s system a rest and see if his learning would improve, the tonic clonics returned lasting longer and stronger. By 14 years old Ben started Charlotte’s Web with much success that he just became five years seizure-free on Charlotte’s Web only, as of December 2020!
Last year he graduated from high school with his twin sister, but today Ben is now in an extended after high school program called The Bridge Program, that is helping him with life skills and job placements.
Though Ben’s latest EEG still shows he is “at risk” for having a breakthrough seizure, he isn’t going to let that stop him, so life goes on! He races his donkeys in the Colorado Summer Heritage Sport of Pack Burro Racing. He hiked his first 14er in 2019, bought his own 3D printer he programs art on after working a part-time job, and hopes to have a future career in computers.
Benjamin is 19 years old now and currently advocates at the Colorado State Capitol so students like him can have better access to their medical cannabis in non-smokable forms on school grounds!
Read more Posts
Abby
Abby was born in December 2020 with two holes in her heart, called an ASD and a VSD (most likely not part of her GRIA2 disorder).
Adam
Our journey began on November 23, 1991 when our son, Adam, was born. His entrance into our world was not easy.