Joe and I at the 2006 NFED Family Conference

I just called a friend to wish him a happy birthday. With a chuckle, he greeted me with the question, “How did you know I was still alive?!”

I told him that with a spirit as big as his, I just knew he was alive and doing well.

And he is. That’s our Joe Barone. He turned 94 years young today.  On our annual call, we caught up. He tells me that he’s blessed to have led a charmed life… and still does.

Joe’s in good health and living with his sister, Anna.  As always, he sings her praises. They take care of one another, as good family does.  He still tends to his beloved garden although it’s smaller these days. His asparagus and garlic are coming up. He’ll plant his tomatoes when it gets warmer. He goes to daily mass and still drives, if it’s within five miles of his house.  Through the phone, I can feel his smile and his happiness.

Joe is one of 10 kids, six of whom are still living, two of which are affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) like he is. They are all coming over tonight to celebrate with him.

I’m the self-appointed president of Joe’s fan club. You can’t be in his presence without smiling. His positive attitude about life and his belief about being grateful for what you have are never lost on me.

Back in 2000, I asked Joe to speak to a philanthropic sorority with me and share his life story in front of 300 women. With a stack of note cards in hand, he took to the podium, charming as ever. He talked about growing up thinking his family was the only one affected by this condition. Without air conditioning and not being able to sweat, he’d retreat to his family’s cellar where it was cooler.  I often think of that image of a young Joe laying on his cellar floor on a hot summer’s day.

Fast forward to today. I tell him about the new treatment they are testing in newborns who have XLHED. He’s amazed to think that in his lifetime, a baby might get this treatment and develop teeth and sweat glands.

As he reflected on his great life, Joe tells me that investing in dental implants just a few years ago was the best thing he ever did. He loves them!

He remembered attending a Family Conference a long time ago and a mom was worried about how long she could expect her son, who was affected by ectodermal dysplasia, to live. After all these years, he remembers her fears.

He asked if I could share with our NFED community that a friend in Norristown, Pennsylvania, who is affected by XLHED turned 94 years young today.  Joe thought perhaps that his story could ease some moms’ fears and they could know that their children with XLHED can live long, happy lives. Because he has.

Joe always ends his letters to NFED with our tagline from the 1980s, “We can’t smile without you.”  Right back at you, Joe. Happy birthday. Today, you are the one who gave me a gift.

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One comment on “94 Years and Going Strong”

  1. 1
    Trisha King on January 16, 2018

    Oh my gosh!! I remember seeing you at our 1st or 2nd conference, and probably all thereafter! And, I thought to myself, when Jacob was all of 2, this is what he’ll look like when he grows up! Which was good!!

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