Jonah Alexander Williams

Please purchase one or more of my magnets!


This is my magnet but its not this tiny!
It's 5 inches.

Please click on the button below and select how many magnets you need.

 

$10.00 Each

Don't care for the blue? Wake Fan? 
See the Black and Gold

My Uncle Peyton designed this neat magnet (shown above) for me so I can help with my support and help find a cure for EB. You can put one on your refrigerator, car, office cubicle or other areas where people will see it and ask questions to learn about EB. If you would like to help support me and let others know that you have joined this fight to cure EB, please purchase one of my magnets for $10.00 and display it where everyone can see. The proceeds will be used for my care and 10% will be donated to the Dystrophic Epidermolysis Bullosa Research Association of America to fund the search for a cure. Please allow several weeks for delivery.

 Hi, my name is Jonah and I am special. My skin is fragile like a butterfly. Only one in every two million babies born are like me with Junctional Epidermolysis Bullosa (JEB). We are called butterfly children and you must touch us with great care. Friction damages our skin causing very painful blisters. That's one on the top of my head. It's a little one and not alone! Most of my body must be bandaged 24/7 to protect me from damage and to help damaged skin heal. It takes two hours or more nightly for my Mommy and Daddy to remove old bandages, bathe me, cover me with Aquaphor and change my bandages. It's not a fun time! 

I was born on February 27, 2009 and am at home with my Mommy and Daddy. Many family members and friends help out after spending my first 32 days in the NICU at Brenner Children's Hospital. It takes more than four hands to take care of me and lots of bandages, Aquaphor and other medical supplies. I can't wear most of the clothes my Mommy has for me because they will damage my skin. I can't handle tags, seams or anything not extra soft. Even most diapers are a problem for me. 

Many babies who have JEB don't make it through their first year. I plan to be one of the exceptions. It will not be easy and I will need lots of help. The painful blisters will never stop showing up and will take time to heal. I will also have hair, nail and major teeth issues as well as possible respiratory problems over time. Sometimes eating is a problem because blisters are also on the inside. 

Most people, including doctors and medical professionals, don't know about EB. For me, and others like me, to find a cure, this must change. My care is expensive and finding a cure is expensive. Solutions begin with awareness. Do you know about EB? Did you know about it before you learned about me? Do your friends and family know about EB? How do you think a solution will be found if few know? I need your love and prayers as do other children and adults fighting to live with EB. We also need your support not only for our everyday needs, but for a cure. 

If you'd like to learn more about EB and how to join the fight against the disease, please visit www.debra.org, the official Web site of the Dystrophic Epidermolysis Bullosa Association of America.

If you don't care for one of my magnets, would you consider a donation for my care? 
Maybe you purchased a magnet but would like to do more! 

Click on the button below to make a donation to my Support Group.
(My support group is made up of family and friends and 100% of what you give goes to my care)

What is Epidermolysis Bullosa?

Epidermolysis bullosa (EB) is a rare, genetic blistering disorder. It is caused by an abnormality in one of the proteins found in the skin, whose function is to hold the layers of the skin together. When one of these proteins is absent or diminished the skin becomes fragile. If this fragile skin is subjected to even minor friction or trauma, the skin separates, fluid seeps into the detached area and a blister is formed.

Blisters may be located in the upper layer of skin (the epidermis) resulting in EB Simplex, in the lower layer of skin (the dermis) resulting in Dystrophic EB, or at the junction of these two layers, resulting in Junctional EB.

Some subtypes of EB are limited to blistering of the skin while other subtypes involve blistering of the mucus membranes, as well. Areas of involvement may include the mouth, nasal mucosa, the surface of the eye, the gastrointestinal and genitourinary tracts.

Matt, Patrice and Jonah Williams

Follow my continuing story at my Mommy's blog:

www.patriceandmattwilliams.blogspot.com


Jonah at Brenner Children's Hospital

Jonah's Facebook Prayer Group Page / Jonah's Facebook Support Group Page

Jonah's Support Group Blog
Make a donation:

Purchase my magnets:

Jonah's Support Group
 310 West Fourth Street, Apt. 1806, Winston-Salem, NC 27101
E-mail address: jonahs.support.group@gmail.com