The Southwest Voice

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A message to my community; My 2-year-old daughter, Gia Renae, was just diagnosed with Rett Syndrome at UCLA Medical Center.

What is RS? For those of us living with daughters who have it, we will never forget the words. For everyone else, it is a devastating neurological disorder, which takes over our daughters and they are unable to speak, walk, crawl or even have purposeful use of their hands. Some people like to call it "developmental arrest." My daughter can think, but how can she express herself to others when she cannot communicate with speech or sign language.
My husband John and I started to notice when Gia was 1 that she wasn't walking in her walker anymore, and she stopped saying the words she had learned, such as "Mamma" and "Dadda."

Tests all came back negative until a doctor mentioned Rett. The results were positive and my husband and I have been trying to cope and do the best we can to provide for our daughter's growing needs.

We had never heard of Rett Syndrome, which I bet most of you haven't. However, Julia Roberts and Hilary Clinton are the spokespeople, and a child is born with this every five hours. It affects every race everywhere in the world, and there is nothing that can be done to change it.

Although there is hope at the end of the tunnel, the gene that causes RS has been found, and if they can only find a cure, so many disorders would benefit, for example, autism and epilepsy.

The IRSA, or the International Rett Syndrome Association, is dependent among donations, and is working tirelessly to find a cure. It doesn't matter how old my husband and I might be when a cure is found, but when our daughter says " I love you " for the first time it will mean everything in the world to us.

There are over 200,000 families in the US that have daughter's affected by RS, and I just want to put the word out there so more people can be informed.

If you have a daughter or a family member with a child that seems to be regressing in their developmental abilites; not learning to walk, or cannot crawl anymore, please have a specialist look at them and call Kern Regional Center. It has helped my daughter so much with her physical therapy and they help all other children facing similar issues. God bless!