By Dennis Claire

Let me start with a confession (as I was raised a Catholic!). I am an introvert. I try to emulate the extroversion of my Irish father, but I usually fall short. The advent of the internet has allowed me to reach out to others in many ways and hide my personal awkwardness. From keeping in closer contact with family across the pond to become more socially and politically involved, I have become an online extrovert.

This laid the perfect scenario for the National Foundation for Ectodermal Dysplasias (NFED) first online Facebook fundraiser.  I had used the internet to research everything from scientific literature on the genetics and medical treatment of ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, which afflicts my son, Ronan, to watching videos posted by cool and inspirational people with this diagnosis.

Through the magic of the internet, I contacted our regional NFED liaison and established a relationship and attended our first NFED meeting even before my son was born. Ronan was diagnosed by a neonatologist 200 miles away via online facetime office visit.

He may have been the first child ever diagnosed in utero, and that from real-time ultrasound images sent securely over the internet. Thus, this family was a natural fit for the online Facebook fundraising effort this year for Ectodermal Dysplasias Awareness Month, and I was particularly motivated to do so.

The Appalachian Trail

Taking the Time to Connect

In the few weeks before my son Ronan was born in July 2015, one of my favorite professional runners, Scott Jurek, made a push to break the speed record for the Appalachian trail. He opted to spend the time and effort to make daily online messages and check-ins via wi-fi or satellite connection in the middle of the woods. He also encouraged anyone to join him on his journey.

He would have been better off focusing on his goal, not fumbling with these modern devices and poor connections in remote areas, but he made that extra effort. To connect with people, to let them join him on his epic adventure and record-setting attempt, and to highlight his fringe endurance sport to make it relevant and important to a broader audience.

The next summer, a local New Hampshire professional multisport athlete, Andrew Drummond, did something very similar, setting an endurance record by running/hiking all the New Hampshire 48 4000’ mountains in one push in less than six days! He also spent the time to connect with people, and share his brilliant journey, which was an artistic and efficient plan of attack over an undulating and haphazard terrain of objectives.

As extremely inspiring and impressive as these athletic accomplishments were, I was astounded by their efforts to share these journeys. As sport begets competition, egoism and covert tactics, these athletes made public and aware their plans and goals, placing themselves in a spot for criticism and paving the way for others to beat their records knowing this information.

Lindsay, Ronan, Denny and Dennis Claire

The Best Way to Face EEC

As the father of a child born with challenges, our instinct is to hide and protect our child from harm, criticism and difficulty. Unfortunately, he will face these no matter what. I have felt that awareness, hard work and unrelenting support would be the best way to face my son’s challenge.

I wanted to approach this fundraising effort in that vein; that my son and our family will face this as less of something to hide or a challenge but more of a chance to spread awareness and education. We wanted to live life fully and share these adventures to inspire everyone.

Admittedly, as an introvert, I would never be the person to go door to door and ask people for money, but I had no qualms in doing what I love, working hard, sharing it and firmly motivating people to donate in this medium of the Facebook fundraiser.

Embracing Vulnerability

Immediately, when I was asked to participate in this NFED online fundraiser, I already had this firm objective in my head. I knew it would be work, but I knew we could do it well.

Sharing a lot makes you vulnerable, but while being uncomfortable, it can be an inspiration to others.

My family and I were shocked at the response.  We raised more than $6,000 in the month.

I think we were successful because we have genuinely reached out with so many people and shared our story over the last two years. People were willing to give at the start, and by tuning into our antics on a regular, almost daily basis, throughout the month, were willing to give more or share our objective. In what we can share, especially in real time, we can motivate others in real time across social, geographical, mental and physical barriers.

I’d like to take this chance, to again thank everyone who either donated or spread awareness of our efforts during the February fundraiser. I, and my family, were grateful for the ability to do this and we hope to make up some novel adventures for future online fundraisers!

Thank you!

Dennis and the rest of the Claire family

 

– Dennis is a guest blogger for the NFED. He’s the father of a son, Ronan, who is affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and a volunteer for the NFED.

3 comments on “The Power of Sharing Our Journey with EEC Syndrome”

  1. 1
    Carolyn Judice on May 23, 2017

    Supporting your family, especially little Ronan, all the way!

  2. 2
    Donna Esposito on May 23, 2017

    Denny and Lindsay!
    So proud of your approach in dealing with your son’s disease! You are an amazing team, especially little Denny! Your dad looks down upon you with such admiration!

  3. 3
    Heather Roche on May 25, 2017

    I love watching you and your family work through everyday life. Your struggles are not easy, but by sharing you raise awareness. Because of your sharing, I was impacted in my pediatric nursing career. I was more prepared, knowledgeable and compassionate for a patient with the same diagnosis. So thank you!

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