Saving Levi's Vision

My 10 year old son Levi has been pre-diagnosed with partial optic atrophy in both eyes, it is the same eye disease that i have. His vision is at 20/70 in one eye and 20/80 in the other. The same point my vision was at when I was 25. This means at this time he will never be able to drive.  Also means he may have a bit steeper of a hill to climb in life than I did. My vision now is around 20/200 or worse. At ohsu we were given some hope but there is nothing available currently. 

He had an "assessment" at ohsu on October 18th 2022 and once get thru the next 2 to 3 appointments, he'll have a diagnosis. Once he gets his diagnosis, since there is "no cure" insurance will not cover alot of his appointments. So here we are. 

I've been going down every Avenue possible, because his eye disease is a mitochondrial disease, we are going to try to find vitamins and minerals and whatever natural remedies we can to help support his mitochondria and in return, hopefully, slow or stop his progression. He has an appt Thursday with a naturopath. He is taking $100 (a months worth) of supplements that I found, daily, just from my own research and talking to people in the support group but I need to safely make sure I'm giving him what he needs and also see what else he can take that can help.

I've been talking to other people and one woman whose 2 kids have ADOA, both see a mito team at the Children's hospital in Philadelphia. Both kids have gotten a "vitamin cocktail" and neither childrens eyes have gotten worse. The mother said her daughter was getting worse at each appt prior. However, one of the tricking things about this disease is that it can also go dormant, for years even decades. So there is no way to tell if the natural way will work, but time. 

There is no way to predict how or how fast this will affect Levi but because you can not regenerate optic nerve fibers, the only hope we have is to try to find a way to stop it. Natural medicine looks at your body as a whole and i firmly believe that when your body is lacking certain vitamins and nutrients, your body isnt getting what it needs and is probably the reason there are so many things like fibromyalgia, adhd, etc.. things people cant really figure out and just slap a "western" medication bandade on it instead.. we're trying to create an integrative team for him.

Levi will need genetic testing and it likely to not be covered. So will his dad, so will his little brother liam. Insurance is a no need to find out if you have a diagnosis type thing but this stupid fn disease has different gene variations, opa 1 and opa plus. The "plus" comes with other things like hearing loss/deafness and nervous system malfunctions.. we also need it for future trials that he can participate in that maybe could lead to a cure and because the gene variations are very different you cant sign up not knowing what one you have. Those are between 6 and 10k from what I've been told.

Heres a link if you want to know more: https://rarediseases.info.nih.gov/diseases/11972/dominant-optic-atrophy

This is an "orphan disease" not enough people have it to focus on a cure. There are a few places doing research on it currently. 

There's no corrective lenses because the cable that transmits the image you see to your brain, dies.

Please share if you dont have the means to donate. levi is the kindest kid. 

He never hesitates to put anyone before himself. 

I can not picture his world going blurry or dark. 

II haven't found peace with this yet and waiting is all we can do. In the mean time, we are going to try everything and everything costs money.. its very hard to ask for help. I'm willing to Travel if needed. If a trial pops up, I want to be able to get him there. Once his series of appts are finished in Portland and he has a "diagnosis" I'm going to try to get him into a pediatric neurologist that specializes in mitochondrial DNA up in Seattle. We will update his go fund me after appointments and changes. Thank you.