A Rare Disorder’s Ripple Effect on Family

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by Jackie Babiarz |

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There are only a handful of people I describe as “someone you want on your team.” My 17-year-old niece, Linden, is one of those people. Among all the perks of marrying my husband, becoming Linden’s aunt is one of them.

I met Linden on her first birthday and knew right away that she was a spark plug. Her competitiveness and confidence in her own unique personality emerged at an early age, and before she became a teenager she was able to take in jokes and dish out comebacks. She knows every comedy shtick to cheer someone up and can be both laid-back and silly. Linden also gives 100% in whatever she does, and because she knows she has to study harder than her siblings to get the same high grades, she puts in the work. She has that “it” factor that you can’t teach. She is the real deal, all the time.

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Linden was 6 when my daughter, Cammy, was diagnosed with Rett syndrome before her second birthday, and they have developed a close bond through the years. During photos, Linden always wanted to hold Cammy, and when Linden lost her first tooth, she asked the tooth fairy to donate the money to the International Rett Syndrome Foundation. Whenever we got together for the holidays, Linden and Cammy were inseparable. I don’t know if Linden even remembers Cammy before Rett syndrome came into our lives. 

family | Rett Syndrome News | Linden holds her cousin, Cammy, for the first time in this photograph from March 2009.

Photo by Jacqueline Babiarz

Linden meets her cousin, Cammy, for the first time in March 2009. (Courtesy of Jacqueline Babiarz)

This past weekend, during their grandfather’s birthday celebration, Cammy and Linden were together again and they both managed to surprise me.

Linden has been working on college applications and when I asked what she was writing her essay about, she looked at me like I had forgotten something she had already told me. She said it was about Cammy. “Didn’t you know that’s why I’m going into biochemistry?” she asked. 

family | Rett Syndrome News | Linden holds her cousin Cammy during a vacation to Hilton Head, S.C., in 2019

Photo by Jacqueline Babiarz

Linden holds her cousin, Cammy, during a vacation to Hilton Head, S.C., in 2019. (Courtesy of Jacqueline Babiarz)

I didn’t know that. Tears welled up in my eyes and Linden shot me a “don’t you dare cry” look, and said something funny to keep me from getting sentimental. Cammy, meanwhile, was smiling from ear to ear. She probably had already known.

I tend to forget that our extended family has lived with Rett syndrome for more than a decade now, too. I am often caught up in my own survival mode tunnel vision to see the mark that Cammy has also made on their lives.

I can’t wait to see where Linden goes next year and how she will make this world a better place for her little cousin. 

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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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