One mom’s mission to help those with Epidermolysis Bullosa

One of the things that I love about this community, is the way that everyone comes together to support each other and how we work together rather than against each other. We all know that this is not a competition, rather it is a collaborative effort. We are all in this together and I am always so honored to be able to work with such an amazing group of people. One of these people is my friend Mandy Sink. Her daughter has ignited her passion and dedication to this community. She is so grateful for all the support that she has received, that she wants to do her part in giving back, here is her story.

468172_10151923606503378_67691980_oIt is, and always has been my passion to be an advocate for those in need. I started my career as a Special Education teacher, mainly working with children with Autism, and I transitioned into a career providing support to teachers across the country as an educational consultant.

However, I never prepared myself to be an advocate for my own child. Throughout my pregnancy I worried about every possible complication, and disability.  A midst the anticipation of a new child, I never spent any time or consideration worrying about rare diseases.

Nine months later, my daughter, Adley was born with Epidermolysis Bullosa, or EB.

It is called “the worst disease you’ve never heard of,” and I completely agree.

IMG_7208EB only effects 1 in 50,000 births in the US. I spent most of my time worrying about Autism, as the odds of that are approximately 1 in 88.

I remember how eager our dermatologist was to give us the news…….. EB Simplex! It was so difficult to find any joy in the results. I was so hopeful that the diagnosis would be that my baby did not have a life-altering, genetic skin disease, which will cause her pain every day.

IMG_7406Every day is a learning experience as a mother, and Adley is the most amazing teacher.  In just a short time she has taught my husband Aaron, and I so much about her and her needs, and also about each other as a family.  My love and respect for Aaron grows each day as I watch him love and care for Adley’s every need.  Aaron’s love, support and enthusiasm is also, what keeps me going.

There is a fine line between raising awareness and exploiting your child.  Because Epidermolysis Bullosa has no cure, I feel awareness is the most important thing I can offer Adley right now.  With the help of I Refuse, and friends in the printing business we made up cards with Adley’s picture, and information about EB on the back.  I have also created a website to help friends and family connect with information about EB and it also spared Aaron and me the emotions of retelling Adley’s story repeatedly.  You can visit her website at http://mandykuts.wix.com/adley

When Adley was about five months old, I was connected with The Butterfly Fund on Facebook.  In connecting with Laurie Sterner, Adley received a beautiful care package from The Butterfly Fund.  I was so inspired that someone could put so much heart into a cause.  I was even more touched that the Butterfly Fund sent the gifts to make Adley comfortable and happy.  I learned that the Butterfly Fund has a birthday club, and they send gifts to all of their ‘butterflies.’

1085107_10152152412518378_100616662_oAfter very short consideration I decided I wanted to give back to the Butterfly Fund, because their gift was the first EB related thing that brought happiness to our lives.  I love to host parties so I decided I would host an awareness raising event, called “The Butterfly Bash,” since the Butterfly Fund’s annual event is called “The Butterfly Ball.”

I began coordinating with Laurie, around December.  Planning the Butterfly Bash has been a way for me to associate very positive energy with EB.  In the planning process I have met hundreds of new resources in and around the EB community; I also have become rejuvenated and inspired by humanity again!  The generosity of strangers, and peoples’ curiosity and compassion has made it much easier to talk about EB.  As I mentioned, I have a hard time distinguishing awareness, and exploitation, you can tell people about Epidermolysis Bullosa, but in reality, until you show a picture of your baby’s wounds do people really understand.  Talking about The Butterfly Bash, is a way to spread awareness, and ease my anxiety about talking about the EB that affects my daughter.

Everyday I meet new people and generate fabulous new donations for our upcoming event.  I am inspired everyday by how many people want to learn more, and want to help!!  The Butterfly Bash has evolved from an idea, to a typical benefit style event, to an ALL DAY, TWO EVENT true BASH!  In the afternoon we will be hosting a family event, with Mini-golf, Face painting, Bake Sale, Butterfly Costume Contest, Carnival games, raffles and more….  In the evening will be the Main Event, complete with buffet dinner, bar package, door prizes, raffles, stand-up comedians, live bands, and adult Butterfly Costume Contest, in which the champion will go home with a very impressive trophy.

As October fast approaches, I am most excited about meeting all of my new found “family” members from the EB community.  The Butterfly Bash, being somewhat centrally located in the US, is providing many families and advocates an opportunity to get together and meet!  I never imagined this would take off the way it has…..  I had only hoped it would ease my pain, and in fact it has done that and much more.

I am so very thankful for all of the support!

Peace, Love, Cure!

You can also stay up to date by joining the FaceBook event The Butterfly Bash