The Griffin Adventures: Gymnastics and McDonald's....together again.

Monday, October 20, 2008

Gymnastics and McDonald's....together again.

Tonight we had gymnastics and for Brody it is a great form of physical therapy. The kids all enjoy it and if they are good, we go to McDonald's. Brody does alot of running around and tumbling on the mats. He also enjoy the music shakers. When he is not sitting in the lap of someone waiting on their child, he is smiling his way into candy from them. Everyone seems to love him and we appreciate them being so tolerate. Here are some recent pictures of him with Millo at the Vanderbilt Fragile X Clinic. He was their very first patient at the FX clinic and Millo was the first service dog in the Doctor Towers. They did a story on Brody and Millo in September in the Kennedy Center for Excellence in Disabilites newspaper.

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The Top Ten Things You Should Know About Fragile X Syndrome

By Mary Beth Langan and Sally Nantais

1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and PCR analysis. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:http://www.fragilex.org/, the National Fragile X Foundationhttp://www.fraxa.org/, Fraxa Research Foundationhttp://www.conquerfragilex.org/, Conquer Fragile X Foundation** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html
Mary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. They can be contacted at mblangan@hotmail.com and sally_nada@juno.com