If my late daughter could’ve had one skill back, what would it be?

Rett syndrome robs a person of the ability to walk, talk, use their hands, and many other actions that most people, myself included, take for granted. While raising our late daughter, Cammy, who had the disease, I’d sometimes let my mind wander to the question, “If she could have one skill back, what would it be?”

Despite the bad hand Cammy was dealt in life, we were grateful she didn’t have a couple of the common symptoms of the syndrome. For example, while up to 90% of Rett syndrome patients experience seizures, Cammy didn’t. She also didn’t have heart abnormalities, including prolonged QT interval (where the heart muscle takes longer than usual to recharge between heartbeats) or cardiac arrhythmias. Medical personnel were surprised to learn that Cammy also wasn’t taking daily medications to treat the disease.

Cammy did have to use a wheelchair and was unable to push or control it on her own because she’d lost all functioning of her hands. She wore ankle-foot orthoses and a thoracic-lumbo-sacral orthosis. She used an eye-gaze device to communicate because Rett syndrome stole her voice. She also had a feeding tube and, in the last couple years of her life, used supplemental oxygen.

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I think the most obvious thing parents like me might want back is their child’s voice. Having Cammy able to verbally communicate her feelings and needs so that we could hear her voice — particularly for her to say “I love you” — would’ve filled my heart every day. It also would’ve made both her life and ours exponentially easier. But that’s not what I’d choose if we could pick a skill for her to have back.

I would’ve chosen to give Cammy the functional use of her hands.

Before Cammy went through developmental regression, she could feed herself, flip through books, play with toys, and give us a high-five. It was devastating to see her slowly lose those abilities.

If Cammy could’ve continued to use her hands, she would’ve had more independence. She would’ve been able to use sign language or a tablet to communicate. She could’ve pushed her own wheelchair. She could’ve played by herself or with others. She could’ve hugged her sister, brushed her own hair, removed an eyelash from her eye, and been more independent with bathing and toileting.

I bet most people wish for something to be different about themselves or their children. Aside from wishing that Rett syndrome wasn’t in our lives at all, I’m certain Cammy could’ve done a million things if she’d had the use of her hands.

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.