EB Parent Encouragement

Having a child with EB is tough. You can survive if you can let attitudes & comments from others roll off you, knowing that your journey as an EB parent is important.
You are your child’s voice, their nurse, their advocate but most of all their parent, their heart & soul.
YOur journey will be tough, but the smallest milestones are huge triumphs & you will experience many heartfelt rewards. Rewards that you will hold in your heart forever.
You are an EB parent and YOU ARE AMAZING! Be kind to yourself!

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Join us on Facebook

Many patients with EB have Facebook pages to gather support, prayers and to share their struggles and achievements. My son does as well. I didn’t make it, a dear photographer friend, who is documenting his life, made it for us.


I scoured Facebook for other pages and this is the list I came up with. Feel free to add the link to ones I may have missed in the Facebook Comment plug in below this post.

THANK YOU & HUGS!