Support Lily-Leukoencephalopathy

Just recently my niece Lily was diagnosed with leukoencephalopathy, with vanishing white matter disease. It is a very rare deadly brain disease that has no cure.  Lily's white matter in her brain is vanishing and has progressed in just a couple of months.  She is losing her ability to walk, and to communicate.  She is also losing her vision and is getting worse.

With this disease Lily is and will continue to be in pain as her muscles will continue to stiffen.  She also gets very painful migraines and her medical team is doing everything they can to make her feel comfortable.

This disease is very rare and there is no cure.  Because this disease is rare, we have a hard time with the insurance company to approve certain tests and are having us continuously wait and having to come out of pocket to pay for her medical expenses.  We are also trying to make her home handicap accessible. 

My family and I are asking for possible donations to help pay for her medical expenses and other big expenses to come. If we are able to raise enough money, we will also send her and her family on a Disney Cruise that she will absolutely love!

We appreciate every single share and penny donated.

http://ghr.nlm.nih.gov/condition/leukoencephalopathy-with-vanishing-white-matter