The Marfan Syndrome Club is a club of hard knocks and tough cookies.
The kids in this club belong to a group of kids that were and are talented, brave, smart, compassionate and often look like each other. Marf kids fit in together. Yep, they fit in their own special club that only allows marf kids to join. I have some ''marf kid'' friends that I would like to tell you about. You won't believe what my friends can do!
Joey is my hero. He is extremely brave and keeps on with the smiles, jokes, laughter...even when he is hurting. I have seen lots of kids at school and play who think they are tough, but they don't have a clue what tough is till they have faced the obstacles and hurdles that my friend, Joey, has come ''nose to nose'' with and did it with style.
From the first moment Joey was born, he has had to face many surgeries, needle sticks and unthinkable tests. It is not easy to know that you might not make it through the next surgery, yet you keep plugging away. Joey can't run and play like the other kids, but that does not slow his mind down one bit. He is sharp and he has a very good sense of humor.
While most kids ease their way through life with very little trouble, Joey fights for every accomplishment he makes. Because he has a wonderful support system at home, he has probably accomplished a lot more than most kids can ever expect to with the same hurdles. Now, you can see why Joey is my hero, a ''marf kids club member''. (Joey lost his heroic battle I am so very sad to report)
But, that does not mean they give up living a productive life. They just turn all that energy and desire to talents that marf kids just seem to naturally have. Sometimes it might take awhile to figure out just what interests them most, but they figure it out and then excel....so stand back, I would not be surprised if Andrew did not turn into a wonderful musician like his mom.
I truly admire Andrew for his determination to find his place in this world while not giving in to depression like some kids might do over their inability to do what they desire most....He just changed his goals. It's kids like Andrew that produce great pieces of artwork, or music for the kids left out of the ''marf kids club'' to enjoy.
The next time you see a very tall, agile kid painting a wonderful picture, playing a great tune on the piano, you might just wonder if that kid is a member of the special club for special kids.
Despite the fact that Bobby's aorta is increasing in size and possibly in need of replacing soon, he is one 17 year old on the go! He is now starting a marfan support group in his area. So Bobby is well on his way from the ''marf kids club'' to helping others to find their niche in our world of all things marfan. I do believe that Bobby's goal is in the computer world. He already has a pretty good idea on the inner workings of computers and will soon be studying to be a Microsoft Certified Systems Engineer.
Bobby will always have a special place in my heart and life. Unfortunately he lives many states away.
Mathew has been through a lot in just 12 short years. He has spinal problems from marfan syndrome and his eyesight has been a major problem, however, just recently improved, thanks to some excellent surgery. There are other marfan related surgeries and problems, but nothing seems to slow Mathews bright mind and enthusiasm. Mathew and Joey have the most severe form of marfan syndrome called "Severe Infantile Marfan Syndrome" which is a newly mutated gene that has not been inherited. These kids suffer so much constant pain, cripling symptoms, and often early deaths. Yet, these kids are the best all-around, upbeat children..
I am impressed beyond words at the way this young man can put his feelings into words. Mathew is articulate and adds some humor when appropriate. Definitely the makings of a great writer. Don't be surprised if you pick up a book someday that is written by this 12 year old ''marf kids club member''. In fact, he has finished a novel, just not had it published yet...I think the world has a treat waiting for them when this young writer fianlly gets published.
While not just anyone can join, you now have the opportunity to see just why the members of the ''marf kids club'' are kids to be admired and kids that grow up to be adults to be admired.
2)Jessica Mouse has marfan syndrome and she joins the Marf Kids Club
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