Amy Spinelli

907079_10151542098284687_259009870_nI became very passionate about supporting EB awareness when my daughter, Ayla Grace, was diagnosed with EBS (Epidermolysis Bullosa Simplex).

Her local medical team was not helpful about EB. Her pediatrician referred her to a pediatric dermatologist. He prescribed some cream and verbally told me what it was, a general textbook description, a rare skin disease that causes blisters…nothing more then that. No informational handouts, no guides to help me care for the wounds/blisters. My local medical professionals were not educated on this diseases…doctors, nurses, specialist; no one was able to provide me with support I desperately was seeking so that I can properly take care of my baby.

As her mom, I was determined to learn as much as possible about EB. I thought I can learn enough to prevent blisters from forming on her delicate baby skin. Well that is what I initially assumed until I started to educate myself on this horrible terrifying disease.

To me, her condition was the worse it can get but that was until I started my research and learned about infants/children like Tripp, Eli, Easton, Jax and many others. At that very moment, my 908239_10151539967164687_1356893064_nheart just ached. I honestly tried to get their stories out of my mind, I wouldn’t and couldn’t even look up EB anymore, it just made me feel so sad. At that moment, I thanked and prayed to God for Ayla only having a mild condition of EBS because I realized how severe it could have been. Days passed and I felt myself thinking about these children. I just couldn’t shut those thoughts off, I couldn’t forget and I knew I didn’t want to either. At night I would see their little precious faces, thinking and wondering how they were, what was going to happen. I knew I couldn’t just let this go. I would talk to my family about it all the time. I felt deep down inside my heart I needed to do something, that’s when I made the choice to get more involved with EB advocacy.

I am in the beginning stages of advocacy but I am determined. One of my goals is to help provide the needed support to families affected by EB and to promote any organization and awareness initiatives for EB. My daughter’s diagnosis lead me to the EB world which inspires me to support all the butterfly children, whether they suffer from the most severe cases or have a few blisters a week. I feel one blisters is one too many for any child to endure. The EB community has changed my life. This is a reality that people don’t even know exists. Every voice can make a difference. Together, we can bring these butterfly children the support they deserve. My effort may not raise millions of dollars but if I can educate people, provide additional awareness that alone can be a powerful movement.

 

 

You can check out Amy’s new endeavor to help support awareness and advocacy through her own talents by visiting her Facebook page  EB Butterfly Mission907891_10151542098299687_1458136145_n

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