Most readers know who Suzanne is, and how we know her, and her two wonderful daughters Alex and Hannah. For those who don't; she met Cindy Tillman and Angie Godfrey in collage at U of P and they have been great friends ever since. I think the first time I met Suzanne was at her 'ladies only' Superbowl party about 8 years ago. Her little brother crashed the party for a few minutes and so that was also the first time I meet Rich. Melanie and Rich started dating a few years after that party and have been together ever since! Some readers may also recognize Suzanne's presence in my life, as she was the chief conspirator behind "Nerf Assassination" and the founder of the book club I attend. I have thoroughly enjoyed getting to know Rich, Suzanne and the rest of their family better since we moved back from Montana. They are wonderful people and I look forward to years of friendship with all of them.
Suzanne's 12 year old daughter, Hannah, has Rett Syndrome. Craig and I are participating in a strollerthon to help raise research dollars for Rett's. If you would like to contribute it is very much appreciated. Every little bit helps! You can donate through my fundraising page at: http://www.firstgiving.com/brendafaulkner
Or click on the "Donate Here!" tab at the top right of my blog.
You can also show support by voting for Rett Syndrome through Pepsi Refresh Project. You can find it through International Rett Syndrome Foundation's website at: http://www.rettsyndrome.org/2.html?option=com_content&Itemid=1000 (I vote by logging in through facebook). It goes till the end of this month and you can vote once a day!
My other purpose with this post is increasing awareness of this developmental disorder. Here is a little about Rett's:
*Rett syndrome is a unique developmental disorder that is first recognized in
infancy and seen almost always in girls, but can be rarely seen in boys.
*Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay
*Rett syndrome is caused by mutations on the X chromosome.
*Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of
every 10,000 to 23,000 female births.
*Rett syndrome is a developmental disorder. It is not a degenerative disorder.
*Rett syndrome causes problems in brain function that are responsible for
cognitive, sensory, emotional, motor and autonomic function. These can include
learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
*Rett symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.
*Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of her mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different.
*Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community. (IRSF, 2008).
Click on following link to veiw a really beautiful and heartbreaking video about Rett's. Be warned, especially for moms with girls, it is very emotional. The video is called Hope for Hannah, which is just an appropriate coincidence (it is not the Hannah we know). Thanks so much for taking time to learn about Rett's!
International Rett Syndrome Foundation, 2008. http://www.rettsyndrome.org/%20%20index.php?option=com_content&task=view&id=16&Itemid=1000
2 comments:
Wow, I just watched the video. It was very eye-opening and sad. I hope they find a cure some day.
Brenda you are a beautiful person!! Thank you so much for your friendship and your awesome efforts to raise awareness of Retts!!!!
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