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I am part of a Discussion Forum for EB Awareness. Today I got an update from it. It was a story about a baby, baby Jonah, born Feb 27th with EB (Epidermolysis Bullosa) just like my niece Lucy. This little guy has been fighting this since he was born and has not gotten to go home. Unlike my niece who's first blisters did not show up until 1 week after she was born, the doctors noticed his as soon as he was born. However, I often wonder if that would not have been Lucy's case if she had come through the birth canal rather than by c-section. But I think for her that was a blessing, she did not enter the world in pain like this sweet baby Jonah.
Jonah's mom and dad had a baby before him that was still born, which makes them think that their first baby had EB as well. But baby Jonah, is fighting the good fight and his mom and dad are determined to take him home one day. His mom started a blog while she was pregnant with her first child, and has continued to blog about their life and to keep people posted about Jonah, but also as a way to cope with all that she has endured and the stress she is carrying.
They are asking for continued prayers for Jonah as well as advice on how to deal with and best treat a baby with EB. Her blog is wonderful and much needed for those that love them and baby Jonah. I think it is great and know it is great for her and helps her deal with all this. For me it was bittersweet. It makes me so amazingly sad to see babies suffering from this horrendous disease, it makes me even more sad knowing the potential fate that baby Jonah may endure. The photos bring back memories of Lucy and brings back the heartache of her short life, and the heartache I feel for my brother and sister in law. NO ONE should lose a child, NO ONE should have to watch their child suffer so much. So please add baby Jonah to your prayers and while you're at it continue to pray for a cure for EB and tell everyone you know about EB. If you have not been following my blog you can go back here to find out about it.
Also, please take the time to check out the blog for Jonah
Jonah's mom and dad had a baby before him that was still born, which makes them think that their first baby had EB as well. But baby Jonah, is fighting the good fight and his mom and dad are determined to take him home one day. His mom started a blog while she was pregnant with her first child, and has continued to blog about their life and to keep people posted about Jonah, but also as a way to cope with all that she has endured and the stress she is carrying.
They are asking for continued prayers for Jonah as well as advice on how to deal with and best treat a baby with EB. Her blog is wonderful and much needed for those that love them and baby Jonah. I think it is great and know it is great for her and helps her deal with all this. For me it was bittersweet. It makes me so amazingly sad to see babies suffering from this horrendous disease, it makes me even more sad knowing the potential fate that baby Jonah may endure. The photos bring back memories of Lucy and brings back the heartache of her short life, and the heartache I feel for my brother and sister in law. NO ONE should lose a child, NO ONE should have to watch their child suffer so much. So please add baby Jonah to your prayers and while you're at it continue to pray for a cure for EB and tell everyone you know about EB. If you have not been following my blog you can go back here to find out about it.
Also, please take the time to check out the blog for Jonah
Here are couple other links that you might be interested in
What Can I do?
Jonah's Facebook Prayer Group Page
Winston Salem Journal Newspaper Article
EB Nurse
EB Info World
1 comment:
Molly,
I've just read about your niece, Lucy. I'm so sorry for your loss. Also, thanks for the prayers for Jonah and letting your friends and family know about Jonah.
Amy (Jonah's aunt)
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