Strollathon for Rett Syndrome!

My sweet Sister Chelan

Chelan & Mom

Chelan & Riv

Most of you know that my older sister (by only 11 month!), Chelan, has Rett Syndrome. Not a lot of people have heard of Rett Syndrome, some of that has to do with the misdiagnosis of the disease, as Autism. The truth is that every 5 hours a girl is born with Retts and it is the leading genetic cause of severe impairment in females. Girls that are born with Retts, are born as healthy beautiful babies! It is only at around the age of 18 months that something begins to change and the disease begins to take hold. I can only imagine how devastating that must have been for my parents to have this healthy girl and then to start seeing signs that something is wrong and not know why.
Chelan like any healthy child started talking and walking. It was around that 18 month mark that things started to back track. Rett Syndrome takes away the ability for the child to speak, move their limbs freely, control their bowls, control their breathing and often results in scoliosis and seizures. My parents didn't find out for years that Chelan had Rett Syndrome. She was misdiagnosed as Autistic as so many are. The painful thing about Retts is it slowly takes these abilities of the child away. I remember when we used to get Chelan to, with much effort on her part, say words and how she would light up in excitement that she was able to talk! Overtime that was slowly taken away from her. Chelan has so much light and energy in her that over time have been masked by her disease and medication she is on to control her seizures. I want everyone to know that that is NOT Chelan to be unresponsive and seem almost empty. Chelan is a girl more full of life then anyone I have met! She is a total prankster and loves a good joke. She touches people with her loving nature. She loves bumpy rides and roller coasters (yes she has been on several!) She is AMAZING in her patients and is one tough cookie!! She rarely cries (even after invasive scoliosis surgery putting a rod down her spine). My point is, Retts and her medications have taken my sister away and hidden her, sometimes I get a glimpse of her as her meds are starting to wear off and there she is again MY SISTER! It reminds me that at times it may be hard to see her through her exterior, but she is there and wants to be apart of things just like everyone else. I love her more then I know how to express and can't wait until she is freed from her lonely prison and we can talk and laugh again together as sisters. I don't mean to say these things to make you sad or feel bad. I just want people to know who my sister really is and that if you give her attention you will see her in there :)
The International Rett Syndrome Foundation has made AMAZING strides in their research of the disease. They have even completely reversed the disease in mice, even in the late stages!! That is so incredible to me! Now more then ever this foundation needs help so they can learn how to use the information they already have and use it for humans. It would be such a triumph to get a CURE, especially when they are right on the edge of one! Because of my Families love for are dear, sweet Chelan and hope that there will soon be a cure for future girls we are taking part in a fund raising Strollathon :) It is being held Sept. 11th and we are trying to raise some funds for this amazing cause. I don't like asking for money, but feel this is something people could really benefit from. The littlest donation will help :)

Please visit our Fund raising site here.

For more info on Rett Syndrome you can look here.
or just ask me :)