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!
I will most certainly be praying for him.
ReplyDelete1 Samuel 1:27
I prayed for this child, and the LORD has granted me what I asked of him.
Blessings and prayer,
Hannah
I will be praying too! Poor little guy, may the Lord heal him soon. :)
ReplyDeleteI just came along to your blog. I will add Jonah and his parents (you) to my prayers.
ReplyDeleteI have been reading your blog for a couple of months. I found it on my friend, Brooke's, blog. I am praying for you and your beautiful baby boy. I have a 20 month old son so we have that bond of loving a baby boy more than life itself. God is working through you and your family to reach so many people through Jonah's life, even though I can't imagine how difficult this road is for you. I can tell that he is a very, very special little boy and I know he has brought so much joy into your lives.
ReplyDeletePraying for you!
ReplyDeleteBut he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Cor. 12:9
Just came across your blog and wanted you to know I am praying for sweet Jonah..he is so precious!! Yall are all in my prayers!
ReplyDeletejust found your blog...i will be praying for him!
ReplyDeleteI will be praying for him. I am sure, those painful blisters will be gone soon...:)
ReplyDeleteJust found you blog!