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 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.
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 and that I have a warrior daughter with immense strength and amazing determination! We are so beyond blessed!
INSURANCE is my #1 pain. The endless hours of making sure we get the supplies we need for Brookie. Insurance only wanting to cover “X” number of things.
Just 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.
I wish people knew that EB is not contagious, and maybe 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.
- Morgan, Mom to Brookie
debra of America is proud to have supported Brooklyn and her family through our Wound Care Distribution Program. Our Wound Care Distribution Program sends critical wound care supplies to thousands of families nationwide at zero cost to them. This essential program ensures that those with EB have access to the supplies they need to manage their condition, even when insurance falls short.
Join the fight against EB. Your tax-deductible donation ensures that no family faces the challenges of EB alone.
