Finding the right time to begin the Make-A-Wish process
A chance encounter led me to refer my late daughter with Rett syndrome
First in a series.
My late daughter, Cammy, was diagnosed with Rett syndrome in 2011, when she was just shy of 2 years old. A year later, someone brought up the idea of referring her to Make-A-Wish, an organization that grants wishes to children with critical illnesses.
At the time, I wasn’t ready to think about my child being qualified for a wish. Starting the process would’ve meant accepting that Cammy had a life-limiting disorder.
It wasn’t until I went with her and her younger sister, Ryan, to a high school pep rally where students were raising money for Make-A-Wish that a chance encounter helped me understand the importance of beginning the application process.
It’s a sign
At the pep rally, a girl also named Ryan began to speak about how Make-A-Wish gave her sister with Rett syndrome the wish of a lifetime, saying the experience created core memories for her family. I was in shock that this student’s name was Ryan because we’d never met another girl with the name of our younger daughter. I was also stunned that this high schooler also had a sister with Rett syndrome.
It seemed we were at the pep rally for a reason.
Listening to this student talk about her sister’s Make-A-Wish trip, I knew it was time to begin seeking that for Cammy. I also wanted it to be a core memory for our Ryan, two years younger than her sister. I contacted Cammy’s pediatrician to fill out the paperwork and make sure Cammy qualified for a wish. Sure enough, Rett syndrome is on the foundation’s list of medically complex disorders.
We then spoke with Cammy about what she wanted as her wish. We knew Disney World was a popular choice, but Cammy didn’t like rides or crowds. Meeting a celebrity is another common wish, but Cammy had already met quite a few, including hockey player Duncan Keith and musician Andrea Bocelli, so she wasn’t interested in that.
But when we asked her if she wanted to do something involving “Sesame Street,” her eyes immediately lit up and she gave us a big smile for “yes!”
From watching “Sesame Street” a million times, Cammy knew a special resort was promoted at the end of each episode. So it was only fitting that her wish was to go to a Beaches “Sesame Street”-themed resort in Turks and Caicos. The thought of spending a full week on a tropical island with life-size “Sesame Street” characters and floating on a lazy river was truly a dream — one that came true for Cammy.
Stay tuned for details about our once-in-a-lifetime trip in my next column.
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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