Stories to Soothe the Soul |
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Some Heartening Facts I hope the parents of very young children will realize these facts, and Survival in Rett syndrome is estimated at 47 years. Death has been reported in only 7% of the known cases of RS. This means that 93% are still with us. Concentrate on those numbers. Sudden death can happen at any age, but that could come from any other cause not even related to Rett syndrome. Your child is on her own course. She may never have seizures or breathing abnormalities like 50% of children with Rett syndrome. Her scoliosis may be mild. She may learn to communicate well and attend her local neighborhood school with kids who adore her. She may walk and continue to walk for decades. But one thing is for sure...if she does have seizures, scoliosis, apnea, breathholding and even if she never walks or talks, your enormous love for this precious child will see you through. Others are here to help you all the way and will lift you up when you are down. You can have a good life. Your daughter can be happy. You may mourn lost dreams, but you can make new dreams. You will learn the most profound lessons in life if you are open to it. And some day, you will realize that Rett syndrome is not the worst thing that can happen to you. Within the burden are the most awesome blessings that take us to places we never imagined and show us how to appreciate that the little things really ARE the big things. Kathy Hunter |
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