Living with Rosalie is a great joy
Living with Rett Syndrome is hard
Rosalie is a typical 5 year old in many ways. She's smart. She's funny. She loves people. She loves animals and she loves music (especially the Wiggles). She loves exploring the world. She laughs a lot. She gets grumpy when she is hungry (like her parents).
Rosalie has Rett Syndrome and this means life for her isn't like every other 5 year old.
Rett Syndrome is a genetic neurological condition that effects brain development and means that Rosalie is reliant on help with all aspects of life. She understands much of what is said to her but can't communicate verbally. She is currently learning to use an eye gaze computer to help her learn to communicate but this is a very slow process. Physically, she is unable to walk or stand unaided and has limited use of her hands.
Rosalie has a PEG feeding tube as she can't drink liquids safely. She has other health issues such as epilepsy and experiences several seizures a day, though we are trying to get these under control.
Her disability has a profound impact on her life and restricts her opportunities and life experiences. We are grateful for the support we receive through our church, friends, family and generous strangers. We also are indebted to Reverse Rett and Rett UK, the two charities in the UK who support families living with Rett Syndrome.
Reverse Rett focuses on research around Rett syndrome and the potential for reversing the symptoms of Rett through gene therapy. You can find out all that they do on their website. You may recognise Rosalie in a few of the pictures as well!
Rett UK focus more on the day to day support of those who live with Rett Syndrome along with education of families, health and social care workers and education providers. They also do advocacy, family support and a wide variety of services that we have benefitted greatly from.
If you have any questions or would like to fundraise for us or either charity, please do get in touch.