Giving Doesn’t Have to Cost a Thing

We can always give something.

Some give money to their favorite charity. Others donate their time to distribute goods at a food pantry. Many do a random act of kindness by paying for the person behind them at a drive-thru. People give thoughts, prayers, hugs, and condolences during a tragedy.

Rett syndrome gives and takes. It gives you a child who seems healthy and neurotypical for the first few months of their life. Then, suddenly, it takes away their ability to sit independently, crawl, and walk. Rett takes away their purposeful hand movements. It takes their voice.

Before long, it gives again. Rett gives the child a wheelchair, orthotics, a stander, a feeding tube, an oxygen machine, a nebulizer, and seizure medication. It gives the family lifelong appointments, therapies, insurance claims, medical bills, grief, worry, heartache, and sleep deprivation.

Beyond all that, Rett gives us hope for a cure. It gives us many incredible Rett families who inspire us. It provides us a platform to reach other families with disabilities. It gives us the best versions of people.

Our families give unconditional love. Friends give emotional support. Co-workers give donations to the International Rett Syndrome Foundation (IRSF). Followers on social media give encouragement.

My 12-year-old daughter, Cammy, gives to others on a daily basis. Although she is unable to speak, Cammy’s smile gives others joy. While lacking functional use of her hands, a gesture resembling a wave gives people a welcome feeling.

Working hard every day without complaining, Cammy gives her therapists the desire to be creative with their treatments. Just by being herself, Cammy gives everyone around her the reality check they need to slow down, calm down, and reset.

Aside from all of these virtues, Cammy still finds a way to give something tangible. Most recently, for a third time, she cut off 8 inches of her hair to give to Children With Hair Loss.

Photo by Jacqueline Babiarz

Cammy donates 8 inches of her hair to Children With Hair Loss last June. (Photo by Jacqueline Babiarz)

Photo by Jacqueline Babiarz

Before and after Cammy’s haircut. (Photo by Jacqueline Babiarz)

Cammy gives my family more than we could ever give her. Relying on me 24/7 for everything most people take for granted, Cammy gives me patience and tolerance as I fumble through this journey. Trusting her dad to be current with all research and care, Cammy gives him motivation to be the chairman of the board of directors for IRSF. Modeling remarkable qualities, Cammy gives her sister, Ryan, the opportunities to show her empathy, kindness, determination, loyalty, and selflessness.

Read more about Cammy’s story at our blog, “Cammy Can Reverse Rett.”

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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.