A Tribute to the Dads Who Rise Above

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by Jackie Babiarz |

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I vividly remember reading an article about the late Boston Marathon icon Dick Hoyt. It was 2005, and I was dating my now husband, Billy, the father of our two beautiful girls, Cammy and Ryan. I sent him the article, knowing he’d love it, too, as he was training for a triathlon.

At that point in my life, as a 25-year-old, I couldn’t entirely comprehend the kind of love Dick had for his son, Rick, who has cerebral palsy, and how they had saved each other’s lives — as well as inspiring a revolution of athletic competition in which an able-bodied person races with a nonambulatory one.

After Cammy was diagnosed with Rett syndrome in 2011, when she was 20 months old, we were grief-stricken. It was kismet that Dick was the keynote speaker at our first International Rett Syndrome Foundation conference (IRSF) that April in Boston. Billy and I wept with every emotion as Hoyt shared the story of his journey. We were inspired — he gave us hope.

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At the time, we had little control over what was happening to our daughter. We did, however, have control over how we would handle our journey with Rett syndrome. Billy rose up to be the kind of father I’d read about.

Rett syndrome or not, Billy has always treated Cammy as if she were a neurotypical child. Unlike me, he does not treat her with kid gloves. He has never compared her with anyone else.

I remember my first Mother’s Day after Cammy was diagnosed. We were at a park listening to a 2-year-old recite his ABCs. As tears welled up in my eyes, Billy whispered in my ear, “Who cares? Our kid is going to cure a rare disorder.”

In 2014, inspired by the Hoyts and Tim Wamback, from the show “Handicap This,” Billy ran 150 miles across Illinois to raise awareness for Rett syndrome. It took five days, which was more than a marathon a day. At the end of each day’s run, Cammy was there with a smile on her face waiting for a hug from her dad. She knew he was doing it for her.

Everything Billy does is with Cammy in his heart. He made several trips to Boston while Cammy participated in a clinical trial for the investigational medication recombinant human IGF-1. Billy takes every opportunity to raise awareness for his girl in the press. He is an advocate for those with special needs. He joined IRSF’s board to help fight for all of those afflicted with Rett syndrome. Together, we have raised over $1.25 million for IRSF in 11 years in Cammy’s honor.

When Billy isn’t doing extraordinary things, he and Cammy love spending one-on-one time together. He has always spoken to her like he does everyone else — maybe with a bit more sarcasm, to which Cammy responds with a giggle. She’s always adored swimming, reading, and watching the Game Show Network with him.

Just as I read that article 17 years ago about Dick Hoyt, I’m certain someone out there is reading something about my husband in total awe, too. I know I am.

 | Rett Syndrome News | A close-up of Cammy and her dad, Billy. She looks at him adoringly and smiles.

Cammy and Billy Babiarz in Boston in 2015. (Photo by Jackie Babiarz)

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.


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