EB – two letters that changed my world forever when my daughter, Melina, was born in January 2010. I was crushed; feeling utterly hopeless when we heard the diagnosis. The first piece of advice the doctor gave us was to NOT look online for information about EB. Which, of course, I completely ignored and began searching online the moment I got home. I was scared. I couldn’t believe the photos I saw. I couldn’t believe the PAIN that was evident in the photos. I felt defeated. Here we were, with this gorgeous newborn baby, and her two beautiful and healthy siblings. I had nearly perfect pregnancies. How can this be happening to her? How can this be happening to us?????
I felt this way for several months, discussing EB only with my immediate family and very close friends. I was so angry. I was so sad. I cried ALL the time. I questioned everything. There was NO ONE I felt I could talk to who could relate to the way I was feeling. I felt alone, even when I was completely surrounded by loved ones.
Then, everything changed.
In October 2011, I was at my computer looking at the hundreds of photos I had of Melina and her blisters and wounds. I sent a message to a friend, (and fellow EB Mom), I had met online a few months earlier. I told her I was thinking of posting some of Melina’s wound pictures on Facebook, yet I was TERRIFIED to do it. I was so afraid of what would happen. What would people think? Would they be angry with me for being so graphic and bold? Would they “unfriend” me? This was a HUGE step for me, as I was so private about Melina’s condition prior to this day. She told me to go for it, so I did. I pressed ENTER, with trembling fingers.
Much to my surprise, the outpouring of support was phenomenal. It felt amazing, and so freeing……to finally let it out! I didn’t feel trapped in my little EB world anymore. This step led me to the EB lounge. My EB family. This amazing place changed my life. I have met the most loving, caring, compassionate and beautiful people in the EB community. I have found women I am proud to call my life-long friends; and we have never met face to face. I feel a deep and genuine love for these people. The advice I have received has altered the way I look at EB and most important, the way I look at Melina and her future. Much love to Melissa P., Laura B., Melissa C., Gwen F., Morissa W., Tammy K. and Angel M.
I have been connected to one of the most beautiful people I’ve had the pleasure of knowing, Melanie Medeiros. She lost her precious daughter, Ava, to EB in 2004. Our first meeting was poetic….she held my hand early last spring while I got my first tattoo on my foot of an EB Butterfly with the word “Believe” under it. Our many “connections” have made it clear that our paths were meant to cross
Then, my mission began.
What started with posting a few photos of Melina’s wounds has turned into a mini-campaign to CURE EB. We have Melina CURE EB ~ Believe t-shirts, car decals, rubber bracelets, awareness cards, address labels and a webpage. We raised over $9,000 last year for EB. We’ve passed out over 1,500 awareness cards and sold over 200 t-shirts! We’ve had articles about our mission in three local papers.
Our 9 year old, Christian, has spoken to the kids in his class about EB and loves to wear his purple EB shirt or hoodie and share awareness cards. He donated his birthday money last year to DebRA! Our 6 year old, Shayla, wears her EB shirt all the time and passes out awareness cards also. In all of her artwork, she includes EB butterflies. They are so protective, supportive and compassionate. My family is AMAZING! They wear our EB shirts constantly and are always ready to share Melina’s story. 12 of my family members have EB awareness tattoos! My Mom is extraordinary! Not only does she completely support my EB mission, and share my passion, she is an amazing Mom and “Mimi”; always there when I need her. My step-father’s pizza shop, (King’s Subs and Pizza in Andover, MA), is covered with Melina’s photos and information about EB. He has raised over $1,200 for EB research by selling our EB bracelets! My husband is quiet about spreading EB awareness, but he fully supports my ambition and asked his company to support EB research at the end of last year. They donated over $2,000 that was collected from the employees!!! My parents, siblings, Aunts and cousins are amazing; constantly supporting our mission. Some of the greatest EB advocates can be found in my family, for sure.
My friends are awesome! I am a lucky girl. The song “You find out who your friends are” is playing in my head! My friends wear our shirts, pass out cards and bracelets and support our mission by sharing Melina’s story. I’ve hosted fundraisers where friends and family members have donated their commission to EB! I’m beyond blessed by the support and love I have.
I’m inspired every day when I look at Melina, and all she must live with. She redefines perseverance. She manages to smile, laugh, run and play in spite of the pain she suffers from.
I’m also inspired by the many beautiful women I’ve had to pleasure of “meeting” who fight the EB awareness fight each day. Christie, Laurie, Sooann, Melinda, Kim and Andrea – thank you for everything you do. I am inspired to do more because of your dedication.
One person can make a difference, Everyone should try!
ps: Some people did “unfriend” me on Facebook……..and apparently I’m much better off without them.