I'll always remember a beautiful summer's day in the Hampshire countryside when Lily was very young and seemingly fit and healthy, when she effortlessly watched and cared for a gaggle of even smaller toddlers, whilst her father played cricket. Lily has lived 75% of her life with Battens disease - a very rare and cruel illness which affects the nervous system and is fatal. Once Lily was blind, I can remember an afternoon of toboganning with Lily laughing and whooping with delight. Now Lily is the one who needs to be cared for 24 hours a day. The BDFA (Battens Disease Family Association) is the charity which Mike (Lily's father) has chaired for the past 10 years. In this time Mike and Fogs (Lily's mother) have helped raise £750,000 for the charity. This year Mike wants to step down with £1,000,000 raised. All research, care and hope for this rare illness is privately funded, and all donations make a huge difference to the lives and families of those affected. Lily is a great friend and her family a total inspiration.

Please see below a letter from Mike:

Dear Friends,

The reason for my note was just to update you on me at the BDFA and to tell you about a campaign that I’m going to run and the reasons why I’m running it.

Lily is settling in well at Heather House and home life is returning to some level of normality. With this as the background, I’ve decided to step down and away from the BDFA this year. Unofficially I stood down as Chairman in May but officially I step down on Saturday at the AGM. It has been a tough year for the organisation with the CEO departing at the turn of the year and a new CEO coming in and finding that funds are becoming increasingly depleted as many families now wish to fund on a restricted basis for their own child or children or for research only. I’m pleased to say an email went out recently from myself & Pauline Docherty (one of the founders) which was a ‘call to arms’ email to remind families that the BDFA can only offer what it does if people are willing to look beyond their own needs and support the organisation as a whole. I see the whole being - family support, research, educational assistance, legal support, fundraising guidance and most importantly someone to be there at diagnosis plus many more other positive things - this is what I have always been very passionate about. The ‘call’ is being answered but we still have more to do but so far the response from families has been exactly what we hoped & wanted.

Whilst I stand down on Saturday, I still feel I have unfinished business. Partly because I always wanted to leave with the charity in a much stronger financial position, which in many ways it is, but mostly because I wanted to inspire & motivate others to get behind a single cause - the whole. I know you have been behind this single cause and I’ve always been extremely grateful for all your support.

So, starting on Saturday, I begin a 12 month campaign, until the 2019 AGM, to raise funds but more importantly to try to inspire & motivate many more families, supporters & people than I have done!

2019 will be my 10th year since Lily’s diagnosis and therefore my 10th year involved with the BDFA. Over the last 9 years - family, friends, colleagues and friends of all of them - have helped me raise c. £750k of much needed funds and so partly because of the nice symmetry, I want to take my/our 10 year association total to £1m, so during my year long campaign I need to raise £250k. I hope not to have to do this all on my own but very much hope to do the bulk of it myself but if I can inspire others to help in any small way that will be a brilliant legacy created by Lily not me.

My campaign is called, ‘Moving the ‘Batten’ on - Lily’s Legacy’. At the 2019 AGM I intend to walk away with my objectives achieved and a promise not to ask anyone again for funds for the BDFA because I don’t need to as others have taken the baton off me.

You have done more than enough already, so I’m not asking you to do anything more personally, but if my campaign inspires you, then I would be truly honoured & humbled by your continued support either through my events or your own fundraising efforts however big or small.

Ascot, has already committed to support me which is huge as I couldn’t do it without them & the City and I’ll be looking to organise the usual array of dinners, parties, golf days, lunches, cake sales etc..which I know have been enjoyed by many over the years.

Thank you for taking the time to read my note. I hope I have inspired you. If you’d like to spread the word, please do. I’m going to run a, ‘Moving the Batten On’ campaign on social media so please keep an eye on Facebook, Instagram, Twitter etc...and set up a just-giving page.

With my best wishes & thanks,

Mike