News

Never Letting Go

Date: 04/26/2013

 

by Maureen Neville

My topic today took an unexpected turn. I was going to introduce the various ways to find charitable grants, (perhaps even down the hall from your office!)  It was all going to be very insightful, including  simple ways to get involved and show support.  But as of this moment - you can look forward to those tips…next week.  Today I will circumvent the donations, the fundraisers and the cutting-edge research and share thoughts on a topic that is, arguably, even more important.

Love.

I watched the news story on Stephanie Turner last night.  Many of you are familiar with Stephanie and her journey, but for those who are not, she is the second oldest living person with Harlequin ichthyosis and she will also be having a baby in just a few short weeks.  She is not only a joyous inspiration, but to the FIRST community, she is the living definition of hope.  The story, featured last night on Channel  5 (WMC-TV) in Memphis, was introduced as “one in a million,” the girl next door…that should not be alive. It was a truly compelling snapshot of her birth, her life, and her iron clad will to survive against the odds.           

But what absolutely took my breath away was actually not Stephanie.  It was her husband Curt.

Interviewed for a few short moments, Curt delivered a message so simplistically profound, it motivated me to scrap what I’d written for today’s blog,  start anew, and share it with all of you tuning in. “You cannot judge someone by what has happened to them or what they were born with”, he said, “the second I met her, I wasn’t letting go.”  His eyes grew wide as he spoke and I sensed that it had never even occurred to him that there was anything to even judge!   Earlier in the interview Stephanie also mentioned that when the two first met, he did not mention the redness of her skin or her skin condition at all.  “Are you wondering why I’m so red? Did that ever cross your mind?” she laughed.

Ah. Love is blind.

May is Ichthyosis Awareness Month, and in an effort to share the lives and experiences of the FIRST community we will be sending, via e-mail, first-person stories, from a varied selection of members.  I have been reading the stories, sorting through the photos, and preparing them for the past two weeks – and as you might imagine, I am moved and inspired every day. 

But today I realized that the stories are not exclusive to those who tell them. 

Today I am reminded of not only the bravery of those who step into the spotlight to share their song of pain and glory, but of the power of the chorus behind them.   Yes, Stephanie Turner is surviving the odds, and although a harsh reality to accept, maybe, statistically, she should not be alive. But perhaps the purpose of her very life, and the lives of all those who are affected by ichthyosis, is to shed light on the chorus; those from whom we learn our most valuable lessons; who do not judge; who see with their heart and who, despite the statistical expectations,  choose to never let go.