Parents establish website on their son’s rare disease

Congressman Chuck Fleischmann met with the parents of a child with a rare disease.

That comes as the Tennessee Representative continues fight for funding for children with these types of problems.

5 year old Grayson Ledbetter of Ooltewah is among those who have a rare disease called Alexander’s disease.

This disease causes children to loose their ability to walk, talk, and eat.

Rep. Chuck Fleischmann told us  ” what we want to do is make sure that there is sufficient funding, actually I voted for that, to make sure that these agencies can perform research on these rare diseases. If you take a disease like Grayson’s ladder supports, it’s very rare but sadly it’s almost fatal.”

Grayson’s parents say that every day is a blessed day to have their son.

They have even created a website to talk about the disease to try and bring awareness about the issue.