I am sending this out to ALL.. Feel free to delete, respond, or forward as you see fit.
To ALL of my friends….PLEASE take a minute to read this. I need you!
Our dear friend Katie have nominated our family to win Pigeon Forge’s Taking back Vacation Sweepstakes. The prize for June is a 2 night vacation for their family and assistance with utility bills for the next 12 months. In July, the prize is also a vacation and assistance with mortgage payments. Several people have asked for more about Mattie’s story, so please feel free to pass this on to anyone that you are asking to have vote for them.
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 gave 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.
Every year, we have been given a new [additional] diagnosis for Mattie. The most difficult news I would say since finding out about the KFS and her hearing loss was this past January when they found out that Mattie has Mitochondrial Myopathy. Basically, her body burns a tremendous amount of energy to create energy 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 12 surgeries she’s been through in the past 10 years and having to take all 84 of the pills 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.
Steve and Shelly
Email me if you would like a daily reminder to vote.
(Below is a note from Katie)
As told, Mattie has endured a lot in her 10 years. But often overlooked or shadowed are her two siblings. Alyssa is 12 and a phenomenal support of leadership and guidance to Mattie. She is always there to help her mom or Mattie with anything and displays a wonderful moral compass for others to see. Alyssa is not your typical pre-teen worried about name brands and new dance moves. Rather, she is a big sister, a wonderful daughter, an aspiring young lady who does good because it is the right thing to do. Then there is James who is 8. James brings spunk to the family. He is full of energy and LOVES learning new things. Books and new games are something he doesn’t do without! James is also always there, ready to help and willing to do what ever it takes to make sure things get done. These kids emulate a community that most kids their ages have no concept of. Sure, there are times where they would rather (and do) choose to do something different, but they get it. They understand that sometimes your extra “umf” is what gets someone else to the next moment. That little bit of above and beyond….goes further than you originally thought.
So I have nominated this family, not because I feel sorry for Mattie (though there are PLENTY of times my heart breaks for her), but because the entire family needs a break. Insurance companies don’t cover Mitochondrial Myopathy therapies and treatments because the diagnosis is so expensive (compared to that of cancer) and so newly discovered that so little is known or understood. The supplemental medications Mattie has to take JUST for this run in excess of $400 per MONTH! She needs a new wheel chair, but insurance is refusing to pay for that because she can “move about her house”. It is ridiculous the battles her mom and dad must wage daily, both in the home and out.
A vacation is something that is NO where in the budget. Please help me pass this story on and get them this vacation. To you and me, it is a moment every day using minimal effort – for them….it is so much larger….SOOO needed….each day, go to http://bit.ly/cGqWj0 – sort by vote and look for Shelly L. from Sugar Hill, GA. Every vote, every day counts….
Thank you for taking the time to read my novel and please pass it on. Pass it to whomever you can to get help voting for this family….they need your support.