My daughter, Rylie Micole, is a little sweetheart.  Any day she wakes up laughing in her own special way or not sick is a blessing.

My name is Cory Mitchell.  I live in Hot Springs, Arkansas, with my wife, Sudie, and our two children, six-year-old Rylie Micole and her little brother, Tanner Waylon, who is three-and-a-half.

I am happy to say our son is perfectly healthy; however, our daughter is not.  She was born with a rare disease that's affected her quality of life.  She was born seemingly healthy; however, about two months into her life, we suspected something was wrong because she wasn't reaching her developmental milestones, and she seemed floppy somehow.

We had no choice but to go from doctor to doctor, to see what was going on.  The news was not good, and it would only get worse, as we found out later.  Our daughter was eventually diagnosed with Leigh's disease, which is a rare neurological degenerative disease that eventually leaves its sufferers totally helpless.  It's in the leukodystrophy family of diseases/disorders.

It was the worst moment of our lives.  The disease was fatal; it would probably kill Rylie by the time she reached ten years of age; if she lived any longer, it would be a miracle.

At first, she laughed, responded to our touch, our voices; however, as the months slipped by, she became more and more like a newborn infant, losing important skills.  She eventually lost her eyesight and her ability to reach for objects.  She would never walk or talk; she would need twenty four hour medical care.

Now at the age of six, Rylie is unable to do anything but lie there in her hospital bed.  She is fed via a nasogastric tube that goes into her nose and down to her belly; she is unable to swallow, even go to the toilet.  She is like a newborn baby.  It is discouraging because even though her little brother is younger, he is already surpassing her developmentally, and she will never improve.

More than once, Sudie and I have discussed the option of having our daughter placed in residental care because it's just too much for us to try to work out a system to where one of us can be with her.  Both of us work, and when we are out of the house, we have my mom, who is in her fifties, watch the children.

Mom tries, but even she gets overwhelmed with all of Rylie's medical needs.  She cries because she wishes she had a healthy granddaughter who could bake cookies, play with her toys, or tell jokes instead of having one who sits in her wheelchair or lies in her bed, a vacant expression on her face, unable to do even the simplest things.

We know that placing Rylie into a home isn't the best option for us to take, but what else can we do?  We have to work because her medical bills are eating us alive.  We have to work to provide for our family, pay the bills. 

If anybody out there can give us any suggestions about what to do about this situation, we are all ears!

Thank you for listening to our story.  We will write in here again; you haven't heard the last from us!

~Sincerely, Cory Addison Mitchell.  :(