Ashley S. - Quilt Finished in 2004

Born: March 31, 1997

Illness: Spina Bifida

A Thank You From Ashley's Family!

I wish you could have send Ashley face when she opened the box... She LOVE it!  Ashley says that her quilt is the prettiest thing she has ever seen.  She doesn't want to be without it ... She lays on her bed with it and also bring it in the living room and watch TV and cover with it.

Thank you and everyone else who helped making the quilt VERY much!! What you guys are doing for these kids are truely a blessing from God and we want you to know that it is greatly appreciated!! 

Thank you again from the bottom of our hearts.

Jennifer and Ashley

Ashley's Story

written by mom Jennifer

Two years prior to Ashley being born we had already lost a child at 6½ months of a very hard pregnancy due to toxemia. This pregnancy would be just as hard. Ashley was born one month premature due to high blood pressure and low amniotic fluid. She weighed 4lbs. 6ozs. She was the most beautiful thing we had ever seen. We fell in love with her right away. The doctor noticed a bump on her back and said he didn’t know what it was. She was with us a few hours before the doctor sent her an hour away from us to a hospital that was more equipped to find out what was wrong with her. I had a c-section, so I wasn’t even to able to hold her before she was taken to the other hospital due to the pain I was in, but at least Ashley’s dad was able to go to the hospital to be with her. He was the first person to feed her a bottle and change her diaper. I was and still am so jealous! A day or two later my doctor let me leave the hospital, earlier that what he wanted to, so I could go to the other hospital to be with Ashley.

I was so excited to walk into that hospital room and see my beautiful baby girl, but I was also scared to death because we knew something was wrong. A nurse coordinator came into the room and told us that Ashley had Spina Bifida. We had no idea how those two words would change our whole world forever. Spina Bifida is where a child is born and their spinal cord is not properly developed. It can affect the child’s ability to walk and many other problems. The doctor let Ashley come home for a week before she would have to return to have her first of many surgeries.

Ashley is a wonderful little girl. She amazes everyone she meets and is able to a lot of things that the doctors said would never be able to do. She goes up the playground slide at school all by herself and gets in and out of her wheelchair. She has to be catheterized 4 times a day, takes medication, uses a wheelchair, but can walk short distances with her Braces and a walker, has bowel and urine problems, deaf in her left ear and has to go through physical therapy weekly.

She had another big surgery on her back were she had to wear full body cast afterwards. Her back is still hurting her. But, we do have to say that Ashley has the best doctors in the world! They really do truly care about her.

Everyone in the family feels truly blessed that Ashley is part of our family. We have overcome a lot of things in the past and we know that we will make it through whatever comes our way in the future as a family.

We have to take Ashley to see her specialists in Cleveland every 6 months because there is a risk that spinal fluid could build up on her brain and this could be life threatening. While we are there, the doctors measure Ashley’s head to see if there are any changes and we have to watch her for signs that this is happening to her. We have to watch for vision changes, headaches, changes in her appetite and changes in the way she acts. If the spinal fluid would build up, she would have to get a shunt to drain the fluid off of her brain. This is all very scary to us.

Ashley now has a sister, Samantha. They are the best of friends even when they are fighting like sisters sometimes do. Our wish is that they will continue to be close as they grow up and share each others ups and downs that life will bring them. Ashley wishes to be just like any other kid. As her parents, that is how we are raising her, like any other wonderful little girl. But, she and her sister have their daddy wrapped around their fingers. Daddy’s little girls! I guess that is how it is suppose to be and I wouldn’t change it for the world!!