Conner’s Legacy

On June 24, 2010, the worldwide CF community was rocked when Conner Jones, age 7, passed away from complications of cystic fibrosis and prune belly syndrome. Although everyone knew it was coming, the loss of Conner left a hole in the Jones family forever. And it was a difficult time for parents of children with CF. I cried for days, and if you saw any red balloons flying above you during the end of June, those were for Conner, whose favorite color was red.

Conner was a precious child who was diagnosed with prune belly syndrome while still in the womb. And though doctors told his parents to abort him, they refused. At the age of one, Connor was diagnosed with CF, becoming the only person ever known to have both of these conditions. Prune belly syndrome meant he didn’t have the abdominal muscles to cough out the thick mucus that CF created in his lungs. And his lack of healthy lungs meant he couldn’t have the surgery that could give him those muscles. It was a lose-lose sort of situation. But in the seven years that Conner was given, he inspired thousands of families living with CF, brought joy, light and laughter to his family, and became a big brother twice.

Conner, although I never had the opportunity to meet him, changed my life. He showed me that even in the face of death, a death he understood and knew was coming, there was joy to be found in life. He taught me to fight to the bitter end for Maggie’s life and for a cure for CF just as he and his family did. His parents are still fighting for a cure for CF. He proved to me, that despite her challenges, Maggie has the ability to have a wonderful, fulfilled life. Conner gave me hope for the future and peace of mind for the challenges that are ahead.

Every time I see a single red balloon, or even a dozen of them all grouped together, I think of Conner. He is making his presence known and reminding us all that life is worth every second and to be grateful for each of them.

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About Nancy

I am a freelance writer focused on parenting children with special needs. My articles have been featured in numerous parenting publications and on I am the former editor and publisher of Vermont HomeStyle Magazine. I am a wife and mom to a two daughters, one with cystic fibrosis and one who is a carrier for cystic fibrosis.