Last July, my four year old sister Kaya, was diagnosed with a rare genetic disorder, Cri du Chat/5p- Syndrome. What this means is that there is a deletion on her fifth chromosome, because of this medically she is considered mentally disabled. Her doctors explained it to us like this; Kaya is missing a piece of information, that piece never made it to her 5th chromosome when her cells were forming. Doctors can't tell us exactly what information is missing. Due to the size of her deletion she will need ongoing therapies and to be cared for, for the rest of her life.
Cri du Chat was discovered 50 years ago by a French doctor. It affects 1-50,000 newborns, that's only about 50-60 people a year in the US. Much of the information that is available is outdated, so many families are given little hope.
My family joined a support group the Cri du Chat/ 5p- Society to find more positive information. We learned to celebrate everything that Kaya can do. I now describe Cri du Chat kind of like a cross between Autism and Down Syndrome because every child/adult is different. Some are very severe and some are mildly affected with similar physical features. The reason I use these two disabilities to explain Cri du Chat Syndrome is because they are so well known. By spreading awareness someday we won't have to compare CDCS to other disabilities, people will know what it is when they hear the name.
Cri du Chat awareness week is May 3th -9th. This year Disabled World has named May 5th Cri du Chat awareness day. I will be doing my part on May 4th to help spread the word by swimming 500 yards and "Kickin' It for Kaya" with several of my team mates from Tinley Park Thunder Swimming in support of Cri du Chat awareness. Please help me raise awareness by making a small donation. 100% of all money raised goes directly to Cri du Chat/ 5p- Society to spread awareness and fund new research.
Thank you for your support and love,
Mira Cutrara & Tinley Park Thunder Swim Team
Watch the Cri du Chat Syndrome awareness week video here:https://www.youtube.com/watch?v=2AEvN0-6M6I
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