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Giving hope to those coping with Rett Syndrome
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Posted by brittany Sun Sep 23, 2007 21:46:38 PDT
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My 2 year old daughter , Gia Renae, has Rett Syndrome — a disorder affecting over 200,000 girls in the United States. It is a neurological disorder that inhibits her ability to walk, talk, use sign language or have purposeful use of her hands. A child is born with this disorder every 5 hours. Although it is a rare syndrome, it hit home when my daughter turned 1. She isn't the baby she used to be, she's gotten over her frustrations of not being able to communicate and having to depend on others for everything. She laughs more, smiles more and seems to know that her family is here for her and always will be.

October is Rett Syndrome awareness month and I have to get the word out there to my community and to all of my family and friends, that there will be a cure someday! However, it depends on financial donations to keep the scientists, researchers, and everyone working together to find this cure. The gene that causes Retts has been found and they have actually stopped the symptoms in lab mice. Now it is time for them to stop the symptoms in our girls. The International Rett Syndrome Association, or IRSA, is a world-wide organization with the mission to increase public awareness and provide information and emotional support to families. There are a couple of clinics devoted to girls with Retts, where a team of specialists work together to help the families understand and provide the best care they can for their daughters. Unfortunately there isn't one close to home in Bakersfield.

My daughter is only 2 and in addition to her pediatrician, she see's a neurologist, cardiologist, ophthalmologist, geneticist, physical and occupational therapist. We still have appointments to make with the gerontologist, speech therapist and nutritionist. Many things in life are not fair. Having a baby that I thought was "normal" for the first year of life and then having all my dreams and hopes for my child ripped away is definitely one of them. Being a young mother of 23, I have endured a lot of heartache, pain and joy that has come along with having a special needs child. But if you could change all of that pain, wouldn't you? Please visit the website at www.Rettsyndrome.org or call 1-800-818-Rett and give a small donation. You may see some familiar faces including the spokeswomen, Julia Roberts and Hillary Clinton. Anything will help, trust me, I know a cure is somewhere in my daughter's future but having it when she is still a child and can re-learn everything she has lost as opposed to when she is already grown up, depends on the donations for research and ultimately on you. Thank you so much for listening, Gia appreciates it too!

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Comment From: aaramarkSWV

Thank you so much for sharing. I wonder if you are familiar with an organization called HEARTS Connection? It's a family resource center for parents and family members of poeple with disabilities. If you have not already come across this wonderful resource (a good place to network and receive more information about all kinds of disabilities) you might want to check it out? HEARTS Connection is located at 3101 N. Sillect Ave. Suite 115 Bakersfield, Ca, 93308. Their phone number is 661-328-9055. They have been a great resource for me and so many others who care about people with disabilities.