Click here to read Jonah's story.
Click here to find out about ways you can help.
Tuesday, May 12, 2009
Thursday, April 30, 2009
ways to help
So many people have asked us for specific things we need or specific ways they can help. As hard as it is to ask for help sometimes, we know that our journey with Jonah is a marathon and not a sprint, and that we will need help of many kinds for a long time. He is doing the hard part, but as his parents, we want to do all we can to help him fight this fight. How amazing that you guys want to help too!
We are overwhelmed and constantly amazed at how much we are loved and how many are praying for Jonah. It is only by God’s grace that so many have found Jonah’s story and so many want to help. We know that God is performing a miracle through our sweet boy. We consider Jonah to be on loan to us – he is not ours. (We do hope, however, this is a very long-term sort of loan).
Thank you so much for your willingness to help. We finally understand what it means to “bear one another’s burdens” and can’t wait for opportunities the Lord gives us to return the love and gifts or pay them forward to others who are in need.
Here is a list of specific ways you can help if you feel so led:
Buy a Magnet
Purchase magnets for $10 each by heading over to Jonah's Support Group Blog, a blog set up by our extended family. Ten percent of the net proceeds from magnet sales will go to DebRA (Dystrophic Epidermolysis Bullosa Research Association of America - debra.org) and the rest will go to care for Jonah. There is also a PayPal account set up through that site if you'd prefer to donate directly rather than buying a magnet.
Tax Deductible Monetary Donations
Our church has graciously set up an account for Jonah where people can make tax deductible donations for our family to help with bills, general over-the-counter supplies (Aquaphor, Polysporin, Desitin, alcohol swabs etc.), and deductibles and co-pays for bandaging supplies. You can make a tax-deductible contribution through Pinedale Christian Church. Please write Jonah Alexander Williams in the “for” line.
Pinedale Christian Church
3395 Peters Creek Parkway
Winston-Salem, NC 27127
Supplies we use regularly (ordered through National Rehab)
- Conco conforming gauze (4X4, 4X3, 2X2)
- sterile gauze
- 25 gauge needles
- Vaseline gauze (3X9)
- Mepilex Transfer
- Mepilex Lite
- Tubifast
Our PO Box
Jonah Williams
C/O Matt Williams
PO Box 11455
Winston-Salem, NC 27116
This information is specifically for people who have requested it. Matt and I expect nothing and covet your prayers for Jonah more than anything else. That is MORE than enough. Please know that we are so thankful that all of you are lifting our beautiful son up to the Father. He is able to do more than we can ask or imagine, but thank you for asking and imagining anyway. :)
We are overwhelmed and constantly amazed at how much we are loved and how many are praying for Jonah. It is only by God’s grace that so many have found Jonah’s story and so many want to help. We know that God is performing a miracle through our sweet boy. We consider Jonah to be on loan to us – he is not ours. (We do hope, however, this is a very long-term sort of loan).
Thank you so much for your willingness to help. We finally understand what it means to “bear one another’s burdens” and can’t wait for opportunities the Lord gives us to return the love and gifts or pay them forward to others who are in need.
Here is a list of specific ways you can help if you feel so led:
Buy a Magnet
Purchase magnets for $10 each by heading over to Jonah's Support Group Blog, a blog set up by our extended family. Ten percent of the net proceeds from magnet sales will go to DebRA (Dystrophic Epidermolysis Bullosa Research Association of America - debra.org) and the rest will go to care for Jonah. There is also a PayPal account set up through that site if you'd prefer to donate directly rather than buying a magnet.
Tax Deductible Monetary Donations
Our church has graciously set up an account for Jonah where people can make tax deductible donations for our family to help with bills, general over-the-counter supplies (Aquaphor, Polysporin, Desitin, alcohol swabs etc.), and deductibles and co-pays for bandaging supplies. You can make a tax-deductible contribution through Pinedale Christian Church. Please write Jonah Alexander Williams in the “for” line.
Pinedale Christian Church
3395 Peters Creek Parkway
Winston-Salem, NC 27127
Over the Counter Supplies we use regularly
- Hand Sanitizer
- Alcohol Swabs
- Aquaphor
- Polysporin
- Original Desitin
- Good Start Gentle Plus SOY Formula
Supplies we use regularly (ordered through National Rehab)
- Conco conforming gauze (4X4, 4X3, 2X2)
- sterile gauze
- 25 gauge needles
- Vaseline gauze (3X9)
- Mepilex Transfer
- Mepilex Lite
- Tubifast
Our PO Box
Jonah Williams
C/O Matt Williams
PO Box 11455
Winston-Salem, NC 27116
This information is specifically for people who have requested it. Matt and I expect nothing and covet your prayers for Jonah more than anything else. That is MORE than enough. Please know that we are so thankful that all of you are lifting our beautiful son up to the Father. He is able to do more than we can ask or imagine, but thank you for asking and imagining anyway. :)
Wednesday, April 29, 2009
about jonah
Hi, my name is Jonah, and I am special.
My skin is fragile like a butterfly. Only one in every two million babies born is like me with Junctional Epidermolysis Bullosa (JEB). We are called butterfly children, and you must touch us with great care. My big brother, Gabe, was stillborn in April of 2008. At the time, no one knew why he died, but now we know it was EB too. His skin was like mine.
Friction and pressure damage our skin causing very painful blisters. Most of my body must be bandaged 24/7 to protect me from damage and to help damaged skin heal. It usually takes at least two hours nightly for my Mommy and Daddy to remove old bandages, bathe me, lance my new blisters, cover me with Aquaphor, and re-bandage me.
I was born on February 27, 2009, and now I’m at home with my Mommy and Daddy after spending my first 32 days of life in the NICU. 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, elastic or anything that’s 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. 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 debra.org, the official Web site of the Dystrophic Epidermolysis Bullosa Association of America. Thank you so much for your help, love, and support. There are so many kids like me out there who need your help. EB is the worst disease you've never heard of. Please join us in the fight to find a cure. And please, don't forget to pray for a miracle!
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