The Griffin Adventures: Life on the Water......

Thursday, June 20, 2013

Life on the Water......

Dear friends and family,
We are leaving the water for the weekend to go to my 30 year class reunion. It has been one kind of a week. Rear view mirror fell off, flat tire, flat spare tire rusted to the car, broken Ipad, busy week for Lucky Buck Jewelry and Curls and Pearls. Thank you for all the blessings in whatever form they came in!
We have had dinner prepared for us five nights, flowers, lunch delivered, low repair bill(tire was fixable) and donations to Blessings in a Backpack.
Keep us in your prayers as we travel to Tennessee. We appreciate all of you.
Brody has had a wonderful summer so far. I checked into another option for his education and they told me it was 100K a year. Whew! We will continue to plug ahead and do the best by him. He is so precious.
I hope to have a chance to write more later but please remember that we will be at the Helen Keller Festival in Tuscumbia next weekend and Darryl Worley is performing on Friday night. Restless Heart will be there on Saturday. Come see us.......
Blessings,
Wendy

PS I got asked to write a story for the magazine Life on the Water. How cool is that?

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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