On 23^rd April, Annabel will be having around 16” cut off her hair – she will be donating this to a charity which makes wigs for children with cancer and we will be making a donation to them towards the cost of making a wig.

At the same time, we are hoping to raise some money for and awareness of the Batten Disease Family Association (the BDFA), an amazing charity that has been supporting us for the last five years since 7^th March 2017, a day on which our lives changed forever and in a way in which we could never possibly have imagined.

We had been coming to terms over the previous 18 months with the fact that Annabel had a progressive genetic eye condition which meant she would, in all likelihood lose her sight. As part of this, we were referred to Moorfields Eye Hospital in London in early 2017 for some further tests but also hopefully to talk about medical trials and real and exciting progress in the area of retinal eye disorders.

Little did we know what would happen next but on 7th March 2017, our world was turned upside down and we received some absolutely devastating news.  Annabel has Juvenile Batten’s Disease (CLN3). It is a very rare neurological disorder, with only around 4 children in the UK being diagnosed with the condition per year. Sadly, the prognosis is not good.

Annabel has already lost most of her sight and in time, she will lose it all. She also has epilepsy, childhood dementia and is now having difficulties with the pace and intonation of her speech. This truly vile disease is slowly stripping away everything that she can do. She will need a wheelchair in the next few years and end up not being able to do anything for herself and have to be fed through a tube. Life expectancy is between late teens and early thirties. There is no cure.

Within only a few days of Annabel’s diagnosis, we had the BDFA family support worker in our front room and the BDFA has continued to support us every step of the way: with dealing with the diagnosis, supporting her at school and putting us in touch with other families with children with CLN3 (Annabel’s condition) as well as other types of Batten’s disease (there are 13 in total). We have had a real battle for things that should just be provided and the BDFA has been with us all of the way. They continue to raise awareness for this tragic disease and the other variants of it and work to fund research and ultimately hopefully find a cure.

We would be absolutely thrilled if you would consider making a donation to the BDFA in support and recognition of Annabel’s big haircut. We want to do something positive and hopefully be able to give a little something back to an organisation that has done so much for us. Even the smallest of amounts will make a real difference.

Thank you for reading all of this and thank you for your support.