I live 4 hours away from there and it took 6 months of planning to get there. Then we got the test. More doctors and finally we were directed to genetic testing. When we finally got the results back. We were devastated. Marshall was diagnosed with batten's disease CLN3 mutation. The vision loss was the first symptom.

We felt so lost and broken because it is our fault that he has this disease. We immediately tested his little sister and she is only a carrier. We are doing everything we can to try to make all the memories for him. But working full time, it's difficult.
We can only hope that one day they come out with some sort of treatment or cure for his CLN3 mutation.

I know funding for rare diseases is difficult to get. So I wanted to help with research for his genetic mutation. I know that there are probably others out there with the same mutation so I wanted to help.