NOTE FROM THE MACS STAFF

Kyle's story has NOT been updated yet since he passed away on August 7th, 2005. We will update the end of his story as soon as we receive more information from his family.

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Kyle's Story
written by mom Crystal

Kyle was born in Denver, NC in Aug 23 1989. I'll always remember the day that Kyle was born. We had a perfect little boy. Like all babies Kyle looked very healthy. He sat up like all the babies his age and walked at about 1 year old.

At about 2 years old, Kyle was getting tried and was asking for a piggyback ride if we went on long trips like the zoo, etc. He was having problems getting off the floor and having problems running and playing like all the kids his age. Kyle was 3 years old when he fell down and broke his leg and hurt his hip. It took a long time to get better.

Kyle was 4 years old when I took him to an orthopedic doctor and was talking to him and asking why Kyle's leg and hip were not getting better and he said for Kyle to get on the floor and see how he was getting up from the floor. That was when the doctor said that he would take a test for Duchenne's Muscular Dystrophy because of the way Kyle was having to pull himself up on a chair or something. So within a week after that appointment the doctor called and said that he needed me to come to the office so that he could talk to me about the tests. He said I have some bad news. The doctor said that Kyle had Duchenne's MD and that we needed to make a appointment with the Muscular Dystrophy office in Charlotte. So in December we had the appointment with the MDA Doctor's and we talked to them a long time about DMD and had to do a lot of blood work on Kyle and DNA tests.

About a year later the doctor said that Kyle needed to get AFO leg and ankle braces that would help Kyle walk a little bit better, so we did. We started him in physical therapy for a few years. Kyle was in and out of doctor offices until he was 5½. That was when Kyle started seeing an orthopedic doctor and a heart doctor too. Doctors said to keep a eye on his heart because with Duchenne's MD it makes the heart weaker as the child gets older. So we went for a check up once a year and the doctor said that he was looking good and to come back in a year. At 6 years old when Kyle was having difficulty walking long and getting very tired that was when we got his first wheelchair. He was in second grade and third grade went very well for him. When Kyle was 8 years old the problems became more and more difficult. In 1998 he had to go through an operation on his feet and ankles to lengthen the tendons so that his feet would be flat and so that Kyle would not have to walk on his tiptoes. Kyle had to do PT to help him walk a little longer, but shortly after that was when Kyle stooped walking. By 9 years old Kyle was in a wheelchair most of the time.

At 10 years old his orthopedic doctor said that we need to talk about the Spinal Fusion and we talked about it for one year before we had the operation. At that time the x-ray said that Kyle's scoliosis was at 28 degrees. Kyle was in a lot of pain with his back all the time. When went back for a year check up it was at 33 degrees and the doctor said that was a good time to have the Spinal Fusion. So we had the operation on September 20th 2000. It took about 9 hours to do it and the doctor come out and said that Kyle did very well and we would take him to the PICU over night and then move him to a regular room. They put a rod in his back from his head to his butt and across his hips. Kyle was in the hospital for 2 weeks after his surgery. He had problems with his stomach and had to get a NG tube in this nose. Kyle got better and we took him home. About 1 week later Kyle was getting sick with a high fever and the doctor said to take Kyle to the ER. The doctor put Kyle back in the hospital so that he could look at his back. Kyle went back to the operating room and the doctor came out to talk with me and Dad and said that Kyle had a deep wound infection down to the hardware. Kyle was under general anesthesia to have his wound cleaned out. The doctor said this was going to be a long hospital stay. They ran tests to see what kind of wound infection it was and found out it was E-coli. They put Kyle on unasyn and vancomycin through IV. Kyle was doing good and the doctor let him come home with the IV, but Kyle was home for about 3 days and the fever went back up so back to the hospital. This time Kyle was very sick and ill and the E-coli was not getting better and Kyle was moved to the PICU again. His heart was not working right and kidneys were not working right and all the problems with his back too.

After all these days in the hospital Kyle has been home and has not been back in the hospital for 3 years now. That is very good for him to stay out of the hospital. But Kyle is on the heart meds and kidney meds. Kyle started having breathing problems so his doctor put him on a C-PAP machine at night to help his breathing and this is working very well for him.

Kyle is school and he is back full time and has been for 3 years now. That is very good for him. Kyle has a aide at school that helps him with things like bathroom and class work and taking notes and help with it all.

This is my story about Kyle. He is my only child.



Email we received from Kyle's mom after he passed away:

Our family would like to extend a very heartfelt thank you for the contribution that you made which helped pay for Kyle's Funeral expenses. We would also like to thank you for all you have done for us since we found you guys in January 2004. Kyle loved his quilt that the ladies from Love Quilts made for him, he loved to sleep with it every night and he sat with his lap quilt every day too.

And thanks for all the cards that he has received. Over the past year he received 1,800 cards. He had a wish to receive 1,000 cards and thank you for making his wish come true.

This is a great Organization and please if you can help this Organization do so, for me and for Angel Kyle and all the kids who have gotten their wings and kids that are still here on Earth too.
May god bless you all.

Crystal & Angel Kyle