Rett UK

For the past 3 months, I’ve had the pleasure of being able to write this series of blogs.  Sadly, this will be the last one I write, and I would like to say thank you to everyone who has read what I’ve written, and given me the loveliest praise on Facebook. All your lovely comments made me so glad that I decided to write these blogs.

As this is my final blog, I would like to dedicate it to Rett UK who, not only gave me the pleasure to write these blogs, but have also helped my sister and the rest of my family in so many ways. When my sister was first diagnosed with Rett Syndrome, the first call my parents made was to Rett UK. As soon as my sister was diagnosed, they gave them direction in what to do and where to go. All the time after that, Rett UK have been so supportive and helpful to the whole family. They help with all sorts of things, from loaning us an eye-gaze, to providing family days for me and my other sister to take part in.

For me and my other sister, it’s been really nice to meet other siblings, and become friends with people our age who can relate to the same situation as we do. Rett UK provide us with sibling days at their regional days and family weekends, where we do lots of fun activities such as rock climbing and sledging. It’s really fun to make new friends, but also nice to have the opportunity to talk about some of the challenges that my other sister and I may have to deal with and for other people to relate to. Not only are there tons of fun activities provided for siblings, but also many leisure activities are offered to my sister to take part in, along with other children with Rett syndrome.

For us as a family, Rett UK lets us know that we are not alone, that we’re not the only family in this situation, and that there are people that we can all talk to about things and that they can relate to us. I think for my parents especially, it’s nice for them to have other parents to talk to that are going through the same situation. Rett UK have helped my parents navigate their way through the health and social care system. They also set up a Rett clinic at the Evelina children’s hospital, which my sister has been to twice. Rett UK loaned my sister an eye-gaze system for a period of time, which has been immensely useful and helpful for not only my sister, but also for our entire family as a means of communication. Although we don’t have an eye-gaze now, it has encouraged us to use the communication cards more often.

As Rett UK have done so much for my family and so many other families, I participated in climbing Mount Snowdon in 2014 with my year at school, where we raised over £4000 for Rett UK, by people sponsoring us to complete the climb. Not only was the trip extremely fun, but we also managed to raise money for Rett UK to put towards helping even more families just like they helped mine.

Once again, I would like to thank everyone who has been reading my blogs for the past three months, and of course a massive thank you to Rett UK for helping my sister and the rest of my family in so many fantastic ways, and for giving me the huge pleasure to write these blogs.

Thank you!

Leah