The Griffin Adventures: Sweet Summer Time...

Monday, August 8, 2011

Sweet Summer Time...

Dear friends and family,

Well Brody has learned how to surf You Tube and loves it. It is amazing that he knows what to do on the Internet. We got him started with Toy Story and then he just went from there. It was so cool to watch him. He has had a great summer and is such a happy kid! We are pleased with our efforts this summer to keep him engaged in learning. We start back on August 15th and go from there. With Bubba at home full time making http://www.luckybuckjewelry.com/ we will have some time together when the children get back in school. FUN! FUN!.........

2 comments:

susielo said...: Hi, I have no knowledge about your son's condition but one thing I do know from reading your blog is that he is a truly inspirational child.
I look forward to following his progress from afar. xo; September 8, 2011 at 3:04 AM
brody's mom said...: Wow, Susielo, thank you so much. We are grateful for people like you that help encourage us and in turn you are our inspiration to continue the journey. Brody is an amazing child and we love him so.; September 11, 2011 at 9:09 PM

Post a Comment

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