Several friends have kindly asked from time to time how Logan is doing, so I thought I would pass on this update from his mom. For those that don't know, this is my nephew, Logan. As you can see, he's one of the happiest kids around. Logan has Fragile X Syndrome, so things aren't always easy for him, but overall he's doing really well. If you're not familiar with Fragile X, or just want to know more about it, please take a few minutes to read my sister-in-law's message below and check out some of the links at the bottom. Sorry this is coming after the official awareness day, but increased awareness shouldn't be limited to just one day anyway, right?
July 22nd has been designated by Congress as National Fragile X Syndrome Awareness Day. Until about three years ago I had no idea what fragile x syndrome was, much less that it would be something that would change our lives forever.
My son Logan is a 6 year old boy with fragile x syndrome. Its a genetic disorder that most people have never heard of, though it affects 1 in 3500 people. One in 250 women is a carrier of the gene that causes this disorder, and 1 in about 700 men is also a carrier; these carriers can ultimately pass this disorder to their children. Fragile X does not discriminate -- it crosses all ethnic, racial, and socio-economic groups. It is more common than muscular dystrophy and cystic fibrosis. Fragile X is the most common cause of inherited mental retardation, though many doctors and the general public have never heard of it. Until September 2003, my husband, my friends and family, and I had never heard of it either.
Logan just turned 6 on the 4th of July. He is a sweet, happy little boy who loves Clifford, his little brother, and books! He is taking swimming lessons this summer and also rides "his" horse Bo every week. He loves McDonald's and Chuck E Cheese just like other little boys his age. Logan cant answer you if you ask him his name or how old he is (but he is getting closer!). He doesn't understand when his friends play games or pretend. He cannot go to the circus, the movies, or any of the live shows of his favorite characters because the noise, the crowds, and the environment itself is too much for him to handle. Unlike most 6 year olds, he is not potty trained and may not be until he is 7 or 8 years old (though his teachers at school and we at home are still working hard on this one). Logan has fragile X syndrome.
Logan was born seemingly healthy and normal, but unknown to us, he had inherited from me a genetic disorder linked to the x chromosome. This disorder keeps his body from producing a protein, called FMR-1, which is necessary for normal development and behaviors. The deficiency in this protein can cause mental deficiencies (especially in boys) anywhere on the spectrum from learning disabilities to severe mental retardation. Fragile X also manifests itself in behavior problems such as anxiety, impulsivity, obsessive-compulsive behaviors, attention deficit, hyperactivity, and autistic-like behaviors (twenty percent of people with Fragile X are also diagnosed with autism).
When he did not walk until he was two years old, and was not talking at all we knew something wasn't right. Everyone we knew said to wait and see -- boys develop slower, all kids are different, Einstein didn't talk until he was three. We went to a neurologist who did a whole range of tests and eventually just threw in the test for fragile X just on the off chance it would tell us something. She said she really didn't think it would come back positive -- the day after our second child was born we got a call telling us that Logan had tested positive. Its an amazing thing to get a diagnosis like this. You are first and foremost grateful that this is not a medical problem. He wont be sick or in the hospital, he won't need surgeries, nor will he die from fragile X. What you do slowly come to realize is that he may, though, never do many of the things we take for granted -- he may never drive a car, get married, or live on his own. You enter a world of therapists and you painstakingly plan every outing, hoping that he will be able to handle the overwhelming new environment and that the fact that he is not like other kids will be lost on those who meet him.
His little brother Lawson is now almost 3 and has outpaced Logan in many areas already -- he is almost potty trained and boy can he talk! He doesn't understand yet that Logan is different or that his life will also be impacted by something that so many people have never heard of. Someday he too will have to explain what it is that causes Logan to act strangely or to not understand the things that seem so obvious to us. Lawson's 50% chance of having fragile x landed in his favor -- he does not carry the gene that causes fragile x syndrome.
We don't know what the future holds for Logan. We do know that this disorder has a wide range of ways that it can develop and that we probably wont know how much he will be able to do until he gets older. Another thing we do know is that this disorder is often undiagnosed or misdiagnosed and that both pediatricians and the general public need to be made more aware.
This year my husband and I will be "celebrating" Fragile X Awareness Day with other fragile x families as we participate in the International Fragile X Conference in Atlanta. There will be an awareness walk to bring attention to the disorder as well.
Why are YOU getting this email? Because if you received it, you either know someone with Fragile X or you know someone who knows someone who has it. Saturday, July 22nd is National Fragile X Awareness Day -- please tell someone about it and help us spread awareness.
You can find more information on Fragile X syndrome at the following websites:
1 comment:
Thanks for posting this. It made me tear up - but hey, so does just about everything! Your brother and sister-in-law are to be commended.
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