Those of you who have read my some of my previous blog posts, may have seen two posts from November last year, regarding little Lily Hall, the daughter of a friend of mine who suffers from Rett Syndrome?
If you haven't read them and wish to do so, please check out them out on the following links.
I wanted to update on the progress and to share an amazing development.
Firstly, the money raised last winter, went a long way to obtaining the vital funds required to allow Lily to have a better quality of life, especially in regards to the special toilet, which offers her some form of independence back. The specialist piece of equipment washes and dries her, and flushes via a remote control. Unfortunately the family had to wait until August for the news that the planning permission was agreed, and some changes have now had to be made regarding the bath unit, and instead they will get a wet room/shower, with a smaller bath for her to have the ability to splash at bathtime!
Alongside that amazing and long awaited news, Lily’s brave supermum - Kerry, has somehow found the time to write and release a children’s book! The book which has been available on Amazon for a fortnight has already hit the #1 Best Seller position on the Amazon chart for Diseases, Illnesses and Injuries for Young Adults.
Forever Be, is a beautifully written short story of three siblings who have different issues, but the same longing for love and togetherness within their family, despite middle sister ‘Rosie’ having very different needs and abilities.
Using her own first hand perspective on how children endeavour to understand something that is different from them, this book is a great way to allow other children to understand that we have differences, and that despite having to communicate in a different way, ‘Rosie’ still loves her family and her life, and the love and honesty which comes across is real.
As a parent of an inquisitive youngster, my son will always question things which are different. In his own way, he has asked various questions about the book when we have read it together at bed time, and this open conversation is a great way to detach stigma from issues such as disability and different needs. At first he wanted to know when she was in a chair, and why she couldn’t eat properly, whether he fully understands at this age is irrelevant, as in my opinion asking questions is an important part of development. Children will accept most things once they understand them, so a book like this is a vital tool in enabling this understanding. It is the type of thing I hope that nurseries and schools encourage, and in my opinion this book should be available in schools and libraries.
Another aspect of the amazing achievement that this is for Kerry, is that her selflessness again shines through, with her willingness to donate a percentage of all profits to Reverse Rett to help fund treatment of Rett Syndrome. I have nothing but admiration for Kerry and the rest of her family.
If you would like to order a copy of Forever Be – it is available via Amazon.
The family will continue to fundraise, and from time to time need a little help themselves. Any donation is much appreciated.To keep upto date with Lily’s progress, join her facebook group, where the family share videos, pictures and updates: https://www.facebook.com/hopeforlilypad/.
To follow the great work done by Reverse Rett - please check out their website: https://www.reverserett.org.uk/