Sunday, March 1, 2009
Baby Jonah and his parents need your support!
This posting comes along with an urgent request for your involvement.
There come times in life when we must lay the business aside and deal with personal matters from the grandfather rather than the home inspector. As you may know I have five children and six grandchildren making children a very large part of my life. My sister has two children and prior to last week four grandchildren (one deceased). It is with the one that this story begins.
Less than a year ago my sister’s son Matt and his wife Patrice lost a full term baby with no explanation. On Friday their second son was born with Epidermolysis Bullosa. EB is an extremely rare genetic disorder involving the attachment of skin to the body. The baby is covered in blister like lesions. A simple touch literally causes the skin to fall off. The baby is treated like a burn patient. The few babies who have this condition are known as butterfly babies because their skin is as fragile as butterfly wings. There is no cure and this condition is so rare the local new born experts have little if any experience dealing with this. The baby can’t be held due to the potential damage. Apparently the first baby may have died from this same thing. They don't test for this in autopsy or in neo-natal testing because of its rarity.
Jonah Alexander Williams is in the critical care NICU at Brenner Children’s Hospital in Winston-Salem, NC. This morning the three experienced NICU nurses cried as they worked with tender care changing the bandages which cover most of his damaged body with the full knowledge that every movement they make not only causes this tiny baby excruciating pain but is potentially further damaging his beleaguered body.
So, why am I sharing this with you and what can you do?
Jonah’s mother, Patrice, is an active bloger and has and is still sharing the family experience on her blog. Also, if you are involved with facebook there is a prayer group set up folk can join to show their support. You can’t imagine what the number climbing as folk visit their blog and join the facebook prayer group does for their disposition. Even more the hundreds who are leaving comments from all over the country bring hope and a bright light to their eyes. Please consider becoming involved by doing one or both.
You can visit their blog by clicking on the photo at the top left corner of this page or at:
The facebook prayer group page is at (or you can access it from their blog):
FaceBook Prayer Group
Thank you for your help