brooklyn: Junctional 

Brooklyn was born with EB. My whole pregnancy was normal, I did not do genetic testing because I had not done it with my son (9 years old-no EB), so it was not a thing of high important to me.  

Brooklyn was born missing some skin on the bottom of her right foot and some nails, while the ones she had appeared somewhat discolored and differently shaped. She was transferred from the hospital where I gave birth to the U of M Masonic Hospital. 

There, she received care from a whole team of wonderful and very important doctors! She underwent genetic testing, and a week or two later, we found out that she has JEB with an LAMA3 gene mutation (two variants). We have faced airway issues, which led to her getting a tracheotomy tube and a G-tube placed for oral lesions.  

Overall, EB has been a hard thing, but it has been a blessing in disguise. I have the opportunity to be at home with our daughter, watch her grow, learn with her, and meet wonderful new people. I am the one that keeps her as healthy as I possibly can, I am her primary caregiver. It is so fantastic to be able to say that, not having to send her to daycare is the best thing ever!

Yes, it is hard and a horrible disorder that causes her a lot of pain. But it has taught me that I am a stronger mother than I knew that I could be, and that I have a warrior daughter with immense strength and amazing determination! We are so beyond blessed!

Learning to do things a different way is hard at first and we are still learning every day. We take each day as it comes. Wound care can be hard because it causes her pain, and no one likes to see their child in pain. We are always looking for other ways to distract/make wound care less stressful for Brooklyn and myself as well. 
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I wish people knew that EB is not contagious and to not stare at others just because they appear different. Individuals with EB are just like everyone else and want to be treated the same. I wish people would simply just ask about her condition in a kind way. 

- Morgan, Mother of Brookie