In loving memory of our sweet angel, Cammy

Jacqueline Babiarz reflects on the passing of her 14-year-old daughter, Cammy

Jackie Babiarz avatar

by Jackie Babiarz |

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For 14 years, we had known this day would come, but we couldn’t possibly have fully prepared for it.

On Dec. 13, 2023, our beautiful daughter Cammy put her superhero cape on one last time. Cammy continued teaching us important lessons right to the very end, as she displayed immense courage, love, and peacefulness while flying off our planet for what we truly believe will be an eternity free from the constraints of a body she was so patient with.

Cammy was surrounded by her family and favorite people, listening to Andrea Bocelli. She wasn’t afraid and she didn’t cry. Our family is comforted in knowing that she was loved unconditionally and that we did everything in our power to give her the best life possible.

A cartoon logo shows a girl with blond ponytails wearing a blue superhero outfit with a large "C" on the chest and a red cape. Above the cartoon figure are the words "Cammy Can," and below it, "Reverse Rett," followed by "www.rettsyndrome.org."

(Courtesy of Jacqueline Babiarz)

Seconds after Cammy passed away, her body relaxed completely, something we’d never seen before, not even when she slept. It was like a movie, as if we could see Rett syndrome leaving her body. It was both beautiful and heartbreaking, but gave us so much peace knowing that she wasn’t in pain anymore or imprisoned in a body that didn’t work.

Cammy is now free to run and play. I know that she ran straight into my parents’ arms in heaven and will look over us every single day.

Cammy loved Sesame Street because it’s the world she imagined for all of us. A world of love, hope, kindness, acceptance, singing, and dancing, where differences are embraced. She saw herself in so many of its characters: the wonder of Elmo; the knowledge of Bert; the exuberance of Grover; the sass of Oscar; the magic of Abby. She possessed all of these qualities and lived by the song that sang, “Kind at home and when you play/ Try some sharing and caring every day/ You’re getting smarter, stronger, kinder/ On Sesame Street.”

Because Cammy was always giving of herself, we are proud to share that she was accepted to Harvard to be part of the Rett syndrome brain bank to help researchers uncover the mysteries of the disease. I have always believed that she would be part of a cure for Rett syndrome one day.

If after reading this you feel moved to take action, a donation to the International Rett Syndrome Foundation in Cammy Babiarz’s memory would soothe our souls. We will never stop working for the day when no other family has to experience this profound loss. No more parents should ever have empty arms.

We will continue to live our lives with the strength, perseverance, love, and kindness of “Cammy Can.”

A young girl with Rett syndrome looks up and flashes a bright smile to the camera. Her eyes are wide open and full of light.

Cammy Babiarz, March 10, 2009-Dec. 13, 2023. (Courtesy of Jacqueline 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.

Comments

Joi Cotton avatar

Joi Cotton

May God continue to bless you. Thank you.

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Corinne Zurlnick avatar

Corinne Zurlnick

As a grandmother of a Rett Syndrome ‘MY GIRL’ Ella Rose…prays for your family and Cammy. Our Ella is beautiful, intelligent who communicates with her facial expressions and her hands…she will stroke our faces gives dozens of kisses, sassy and funny. Loves her princess movies. Ella is 9 yrs old just diagnosed with Atypical Rett. Everyone who meets my girl falls in love with her her smiles puts smiles on everyone. My son and daughter in law started a Foundation for disabled children of Orange and Sullivan counties in upstate New York…my children are so strong, they fight everyday for the Ella to receive the care that is needed…so sorry the states of America DONOT take care children and provide the nescessary care that children need. Please contribute to RETT. Thank you

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