This inspiring story from New South Wales, Australia recently caught our attention in that it illustrates how a deeply dedicated mother is trying to work together with local disability services officials, a private banker, and city council officials to spearhead an innovative day care, respite, and supported accomodation program for people with disabilities as they get older. This particular story involves a mother of 23–year old twin sisters, one who has Rett syndrome and one who has high functioning autism.

The heart warming headline of the story sums it up best: “Disabled people have a lot to look forward to”.

Those of us in the Rett Syndrome Community who knew about this were shocked and saddened to hear about Stephanie Cupps of South Carolina, who was seriously injured in 2004 in a vehicle accident when her respite worker (who has legally drunk at the time) drove off Interstate 20 and crashed the vehicle. The details of this story were told by Stephanie’s mother Amy Davenport one of the Rett Syndrome email discussion groups.

We learned from this WLTX-TV story that on August 31, 2007, prosecutors finally filed charged the respite worker with neglect and abuse of a vulnerable adult, which is a felony.

Amy was quoted as saying: “It’s up to the court system now. I do feel like we followed it through, and that’s what I wanted to do for Stephanie."

We offer our heartfelt kudos to Amy for the courage and persistence in pursuing this matter. It would seem to me that “following through” may not have been as easy a task as it would seem. It would probably have been easier to simply let the past go by, particularly with the rigors of caring for an adult with Rett Syndrome. The challenges of navigating any legal system are significant, although I am not certainly familiar with what Amy went through. I would imagine she had to spend a great deal of time convincing a prosecuting attorney why they needed to invest their limited time to more fully investigate what many might have considered a "cold case".

Kudos also to those in the Rett Syndrome Community who may have provided the encouragement, inspiration, and advice that may have bolstered Amy’s follow through efforts. This type of encouragement and assistance is what makes being a member of the Rett Syndrome Community such a joy. Kind words of encouragement can indeed inspire others to not only get through the rigors of each day, they can empower ordinary people to do extraordinary things.

We are hoping to learn more about how Stephanie is doing and will let you know more. Stay tuned…and keep those kind thoughts coming! It sure feels better than hearing hostile words doesn’t it?   

We were intrigued by this clinical trials study being conducted by the Division of Medical Genetics at the University of Mississippi Medical Center.

The University is recruiting parents of children with Rett syndrome to participate in a study to help determine potential causes of the increasing prevalence of the disorder. The study is being conducted using an anonymous on-line survey available to parents through a secure link.

The study consists of approximately 90 questions about the affected child, siblings, parents, and grandparents, which will take roughly 10-15 minutes to complete. Several families will also be invited to participate in a phone interview. Both the survey and the phone interview are conducted using a self-designated code to protect anonymity and patient privacy. No identifying information such as name, date of birth, address, or phone number will be asked. Only questions regarding the year of birth of family members will be asked. 

For more information click here:

We enjoyed reading this article in the July 15, 2007 issue of the St. Louis (MO) Post Dispatch newspaper highlighting nine-year old Ellie McCool’s time at the Renaud Spirit Center in O’Fallon, Missouri, a local summer day camp. Ellie is the daughter of Dave and Mickie McCool. Mickie is a regional representative for the International Rett Syndrome Foundation. 

Apparently Ellie was the first child who uses a wheelchair to ever be admitted into this day camp. The fact that the day camp assigned a one-on-one aid to assist Ellie is a significant indication of the camp’s commitment to including children with disabilities in their summer program. 

Not only was Ellie’s acceptance into the program a ground-breaking event, her mom Mickie succeeded in “breaking the ice” with other kids at the camp by speaking with them about Ellie and Rett Syndrome the first day. It is clear from the story that the introduction succeeded. It isn’t easy for any child the first day of camp or school, particularly one who cannot speak for herself. In situations like this with our daughters we have found it is very helpful to stress the similarities our child has with their peers more than the physical challenges they face.

Congratulations to Ellie and kudos to the McCools and the folks at the Renaud Spirit Center.