Duchenne Muscular is an inherited disorder of progressive muscular weakness, typically found in boys. Girls can be carriers and mildly affected, but DMD typically affects boys. For boys with Duchenne  the average life expectancy is age 26.

Our son Christian was diagnosed with Duchenne at age 4. We applied for Arkansas Waiver when he was 6 years old knowing there was a 10 year wait list. By age 16 we knew Christian was likely going to be wheelchair bound as most boys with DMD are unable to walk by 10-12 years old. We got denied year after year of applying for waiver. We were told he didn’t “meet the criteria, he was too mobile.” 

After fighting for 5-6 years we finally got Christian approved to be on the Arkansas waiver 10 year wait list. 

Christian is almost 17 years old and is not expected to be off the wait list until he is around age 22.

We have been unable to access the benefits of having equipment in our home for the care of our now almost 17 year old son. We have have had to appeal, and fight an what seems to be an endless battle to make ours and our child’s life easier. We have had to pay out of pocket for things that waiver would have paid for.

I am currently trying to get a change made in the process for boys with Duchenne or ANY OTHER PROGRESSIVE TERMINAL DISEASE who apply for Arkansas waiver. A progressive disease sometimes cannot be seen in a child, but can be proven through genetic testing. Those children should not have to do without just because at the time of the application the child is not In crisis. 

Please sign this, so I can send these signatures to the Governor. It may not be done in time to help our son, but we can try to help all the other children in Arkansas who have struggled like we have with the Waiver process.