Saturday, April 20, 2013

T-SHIRTS, ETC.

Friends, Emily Quinn, posted this on facebook. The shirts are nice and serve 3 purposes. 1) to spread awareness of Batten Disease, 2) to raise money toward a handicapped accessible van for William, and 3) to cover your body. Sounds like a win-win to me. Thanks, Gwen (proud grandmother)

(THE T-SHIRTS FROM THIS SOURCE IS OVER.  NEW T-SHIRTS COMING.  WILL POST MORE LATER ABOUT THEM.)

Please order t-shirts here to help the Braddock family raise money for a van for William. I would like to introduce you to my beautiful friend, Braley; her husband, Jason; dauhter, Addie; and 4 year-old son, William. Braley and Jason both went to high school with me at Central Academy in Macon, MS. Braley and I were also “brought up” in the same church, and have kept in touch throughout the years.

 This past year, this family has been through more than I can ever bear to imagine. William began having sleepless nights and having a speech delay. After many, many tests it was concluded that he had Late-Infantile Batten Disease. I had never heard of this disease, so I after I googled it, I realized the difficult road not only Braley, Jason, and William had before them, but the whole family had in front of them. They have an amazing sense of strength and faith in God, and I can only pray that I have the same if I ever come face-to-face with a similar trial in life.

Kendrick Higginbotham Adams and I decided that we would like to do something for them in addition to the prayers we have been sending, so we thought a t-shirt sale would be a great way not only to raise money for William, but also to spread awareness. I am asking my friends, to buy a shirt and to also share the link. We will arrange delivery of the shirts once they are in. For those of you who are not around the North MS, Macon, or Arkansas area, I will mail them to you at no additional charge. The Braddock family will get 100% of the proceeds from this fundraiser. William can no longer walk, and they are saving their money for a handicapped accessible van.

I know many of you are wondering what Late Infantile Batten Disease is, so I have added the next information from William’s Facebook Page “William’s Journey.”

Late Infantile Batten Disease is a rare genetic disorder in which both parents each carry a copy of the same defective gene in order for their child to have the disease (one out of every four of their children will have Batten disease). William's older sister, Addie, doesn't have Batten, but she probably has the recessive gene. The odds of having a child with Batten disease is about 2 out of every 100,000 live births.

There are four types of Batten disease: Infantile, Late Infantile, Juvenile, and Adult onset. Approximately 200 live in the United States with Batten disease. A family will only carry 1 type of the disease. William has the second most deadly form of the disease, Late Infantile. The life expectancy for Late Infantile is 8 to 12 years, but often takes them sooner. The child can show symptoms between ages 2 and 4.

In the beginning stages, William was diagnosed with PDD-NOS because he had delayed speech. Batten disease rapidly causes loss of muscle coordination/weakness (clumsiness at first) to the point of losing all ability to walk, to use their hands or play with toys, to talk or even make sounds, to eat or swallow anything, and they go blind unable to watch their favorite cartoons. The children have intractable (uncontrollable seizures) all day long and the disease only progresses. It doesn’t get better day to day. It only gets worse as they progress, and it progresses at a rapid rate. And for the family, it is a heartbreaking, breathtaking, and very helpless process. There is no treatment at all, and there is no cure!

To us, Batten Disease mimics, looks and feels like that of Alzheimer's, Muscular Dystrophy, Uncontrollable Epilepsy, Parkinson's disease along with total blindness, and the inability to swallow, or speak anything at all. Please go to “William’s Journey” Facebook page and “like” it. We are hoping to bring more awareness to this rare disease by “liking” and “sharing” his page. Thank you!

(THE T-SHIRTS FROM THIS SOURCE IS OVER. NEW T-SHIRTS COMING. WILL POST MORE LATER ABOUT THEM.)
If you would like to order a t-shirt, please follow the directions below: BATTEN DOWN T-SHIRT Go Here to View THE T-Shirt: http://www.thegraphiccowcompany.com/tgccproofs/184705.jpg COPY AND PASTE THIS AS THE URL: http://www.thegraphiccowcompany.com/t-shirtbanker/signup/ Copy and Paste this Sign-Up Roster Code when Requested: TH418201353724PM82 When it asks for the Organization, go down to the bottom of the drop down list and select NONE or DON'T use an Organization... Follow directions after that for payment, etc. If you have any questions or need assistance, please contact: Miranda at 800-472-3269 or by e-mail: miranda@grafcow.com

  Please Report any Discreptancies in Your T-Shirt Order within (2) Two Business Days To Your T-Shirt Chair: EMILY QUINN - mord3@yahoo.com. The Graphic Cow can not be Responsible for Any Discreptancies Reported after (2) Two Business Days.

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