Birthdate - April 28, 2000
Main Diagnosis - Mitochondrial Myopathy, Klippel Feil Syndrome, Dysautonomia
THEME: Flowers
Biography
Mattie has always been a happy, loving girl. Even as a baby, she was laughing all the time. There were things about her though that didn't seem quite right. For instance, she only nursed from one side, and she would cry and just lay face down when we tried to play with her on her tummy. Mattie's medical journey began at the age of 6 months when we discovered that she had Klippel Feil Syndrome. The syndrome is considered an orphan syndrome and is quite rare. It took several months seeing specialists to finally get a diagnosis. The major issue with Klippel-Feil Syndrome is that Mattie had fused and malformed vertebrae in her neck. That was making her neck tilt to the right and whenever she looked at you, her head was tilted to one side, kind of like a puppy when they don't understand you. She was at risk for serious injury if she landed on her head or neck from a fall, so there were numerous activities she wasn't allowed to do that other little kids got to, like somersaults and cartwheels.
From that point on, it seemed that Mattie couldn't catch a break. We kept finding more and more things wrong. The base of her spine was malformed which made it painful for her to sit, we discovered she is deaf in her right ear, and has a mild hearing loss in her left. At the age of four, her tilt was beginning to increase and the difficult decision was made to straighten out her spine as much as possible and fuse her neck vertebrae to stop the curvature (she was at a 45 degree tilt at that time). Since she had been used to seeing the world from a heavy tilt for so long, she had to relearn to walk and balance all over again. She has been in physical, occupational and speech therapy for as long as I can remember, primarily to keep from losing abilities rather than to gain them. Mattie has always been weaker than her peers, but much more so in her right hand. After many years of working to strengthen the muscles, we found out she was missing some very important muscles in her right hand. Surgery corrected the problem and given her the ability to open a bag of chips or a candy bar and other stuff like that that we all take for granted so often.
One of the big issues for Mattie though was unsolved until this past January. She would have difficulty making it through a day of school without being absolutely wiped out. There were days where she would come home and go to bed and sleep until the next morning. She could run around with the other kids, but she paid a high price for it afterward. We couldn't figure out what was going on. She had what we referred to as "gray days" where she would wake up and have a gray pallor about her face. What we though was her normal temperature was around 99.5 degrees. She would have pain in her legs and just be worn out from the word go.
The most difficult news I would say since finding out about the KFS and her hearing loss was January 2010 when we found out that Mattie has Mitochondrial Myopathy. Basically, her body burns a tremendous amount of energy to create it for her muscles and organs. When she uses energy it takes her longer to refill the tanks, and the tanks are incapable of ever being full. When she pushes herself too hard it is very damaging and dangerous to her body. As a result, the wheelchair has gone from occasionally used to a frequently used. She has to "spend" her energy frugally and wisely, which was a foreign concept to us.
It is difficult to watch any child go through the 14 surgeries she's been through in the past 10 years and having to take all of the medications she takes each week. However, Mattie is such a sweet girl who is so patient and enduring of all the numerous doctors visits and procedures and surgeries. She is a very intelligent, talented child who sets the curve in school, reads anything she can get her hands on, and is an accomplished pianist. She doesn't understand why she is the way she is and unfortunately we don't always have an answer for her with those tough questions.
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