Welcome back Kate’s Krew! We hope everyone is staying healthy and safe! While this year’s Strollathon will certainly look different, we appreciate your continued support of Kate and all those with Rett syndrome. Since the Strollathon is virtual this year, we want to see all of Kate’s Krew in pictures and videos doing their ‘stroll’! We will certainly miss seeing all of you in person!
In the last year, Kate got promoted to big sister which was certainly a highlight for her. She loves to hold Molly with our help and is concerned when she cries. We are excited to see them interact as Molly grows up. Kate is also bonding more with our dog, Cody. They like to follow each other around and get into mischief.
For Kate and her fellow friends with Rett syndrome, the most exciting thing to happen this year is Kate is participating in a clinical trial to treat Rett syndrome! Rett syndrome has certainly presented many challenges to our lives. We are hopeful that this treatment could relieve some symptoms. We have to thank all of Kate’s Krew for helping make this happen with all your donations through the years supporting us and Rettsyndrome.org. This organization is responsible for great things. When Kate was diagnosed, it was hard to imagine this day and better yet a cure. We are hopeful for this treatment and many others being researched.
In addition to the clinical trial, Kate is continuing with therapy both at Cincinnati Children’s and through school. Having a nonverbal child is very difficult. We work every day to find methods to understand Kate’s wants and needs. Since she doesn’t have good control of her hands, Kate has an eye gaze communication device where her eyes make choices by looking at the screen. She is participating in a tech group at Cincinnati Children’s where she tries to communicate with her device to other children who also have eye gaze communication devices. We are thankful for this opportunity.
We hope we can give all of you big thank you hugs soon. Thank you for loving our girl!
I am walking in the Strollathon, Rettsyndrome.org’s signature fundraising and awareness event, to raise money for essential research of effective treatments and to find a cure for Rett syndrome.
Rett syndrome is a genetic neurological disorder occurring almost exclusively in females and becoming apparent after 6-18 months of early normal development. The resulting regression leads to lifelong impairments, including lost speech, seizures, scoliosis, irregular breathing patterns, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett syndrome require maximum assistance with basic daily activities.
Your donation will help fund important research and family support. This cause is very important to me and I appreciate your help as we fight for a cure for Rett syndrome!
Please join me or donate to my efforts to support Rettsyndrome.org in finding a cure! Your help is our hope!