The Griffin Adventures: Church at Lake Guntersville

Wednesday, February 23, 2011

Brody's Birthday Bash coming up.........

Dear friends,
Every year we have planned Brody's Birthday Bash to celebrate his life and to remember someone or something that needs a little help. This year we would like to donate to Blessings in a Backpack. It is a wonderful cause that provides food for the weekend for free or reduced price lunch children in the Guntersville Elementary School. Every week we meet on Thursdays and pack over 200 packs for the children to take home. It is hard to believe that some children only have breakfast and lunch to count on for their meals.
Please help us make a difference. It only takes $80.00 to sponsor a child for the whole year and we will be celebrating this on Brody's Birthday May 30. Checks can be made payable to Church at Lake Guntersville with Blessings in a Backpack in the memo line and mailed to me at 1621 Wyeth Drive, Guntersville, AL 35976. All of this I humbly ask in Brody's honor.
Once again we will be sharing Brody's needs for his birthday as well:
Chicken noodle soup
Spaghetti Oh's
Goodnites L-XL
Baby wipes
Gatorade
Snack foods
Gummi bears
This year we are also asking for a stroller for Brody. They cost $1500.00 and we need one for him as he can't walk long distances and I can no longer carry him. We have a wheelchair and a child's push chair which are working in a pinch but with no restraint in one and the other so heavy, only in a pinch. There is also a buddy bike that we would love to have as a family but way out of our price range. I know with the generosity of others and your love and support that this will be the best birthday yet.
Blessings to you and yours for our help.
Wendy Griffin

Sunday, August 22, 2010

The Griffin Adventures in Guntersville, Alabama

Dear friends,
What a great summer we have had! Life is an adventure to be lived everyday. This is bound to be the richest we have ever been as a family. When we are at a financial low from starting over and building my business at Darlene's Salon and Day Spa, we are at an ALL TIME HIGH. Bubba is making Lucky Buck Jewelry for the September event in Scottsboro called First Monday. He and Nanny are a tag team when it comes to supplies. If we don't have it, she does and if she doesn't have it, we do!
We have been asked by school and the bus to bring extra snacks for Brody. We have been creative at home and this week the Spaghetti Oh's are half price at Piggly Wiggly. Woo Hoo!
The Church at Lake Guntersville has been more than welcoming to us and now Brody has his own room. We are to bring snacks, drinks and supplies to stock it instead of bring a bag every week. What a blessing...
We will be in Tennessee for the Goats, Music and More Festival the second weekend in October. It should prove to be a wonderful event and we are excited to see our friends.
Our new home is awesome and we are enjoying living across the street from the water. We have a bedroom for everyone and Millo is adjusting there. He has had the hardest time with the steps because they don't have carpet. His friends just moved in to Albertville and their names are Shorty and Daisy. They are my mom's dogs that moved here from Tennessee.
Please keep us in your prayers and I will write soon.

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