Jon Groven

2 years ago Jon ended up in the hospital after he lost his vision. Turns out the he had quick onset of cataracts, but while in hospital doctors noticed some balance issues and because vision loss and balance issues are both symptoms of brain tumours he was given a CT scan which found an abnormality in the brain. Jons legs along with his balance had been deteriorating over the past few years. Because they were unsure of what it was, he was sent for several MRI's which showed what the Doctor believed to be a disease called Luekodystrophy and referred him to the Adult Metabolic Disease Centre. After some genetic testing on his blood and family members blood Jon was officially diagnosed with a disease called Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation (LBSL, OMIM #611105). It is an extremely rare genetic condition that both he and his sister have been diagnosed with. Both of the parents are carriers of the genetic marker and together (with a 1 in 70,000,000 chance) the disease was passed along. In the time since diagnosis Jon has continued to deteriorate and is now confined to a wheel chair. He was had to stop working. The purpose of this go fund me page is to alleviate cost of living, i.e., food, prescriptions etc, and parenting, as he is a single father of 2 boys who both live with him, while Jon transitions to disability. Any help would be appreciated greatly. Below I have a link with information about the disease.

https://www.ncbi.nlm.nih.gov/books/NBK43417/

https://movementdisorders.onlinelibrary.wiley.com/doi/full/10.1002/mdc3.13281#:~:text=mechanism%20is%20required.-,Leukoencephalopathy%20with%20brainstem%20and%20spinal%20cord%20involvement%20and%20lactate%20elevation,dysfunction%20of%20the%20posterior%20cord.