I encourage you to read my and the Lily Foundation story here and in the various updates I have and will continue to post up to and post my birthday on 22nd April.

Every other day in the UK, a baby is born who may develop serious mitochondrial disease. The Lily Foundation was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from mito at just 8 months old. Finding little information or support to help her, Liz set out to provide answers for herself and others in her situation. The charity exists today to support affected patients and families, raise awareness of this little-known but incurable genetic condition and fund research into treatments and an eventual cure.

For my own part I was diagnosed with a mitochondrial issue in 2024.

It has been fascinating to learn through the foundation the reasons why so many people go so long without a diagnosis of what I was told is a rare condition (1:200,000, I was originally quoted). Even since that date things have moved on (not always positively for me) however I want to do something while I still can for fellow sufferers. So on my 70th birthday I intend as a user of a walking stick in town, with balance, muscle fatigue, sight and hearing issues, to get out among the trees at Westonbirt Arboretum, with a much more substantial stick, and sit on as many benches as I can within 4 hours. My initial aim was 50, but I believe I can achieve 70 and perhaps even one hundred. (This will not include the many picnic benches around café areas.)

My hope is that I can:

1. raise the profile of the Foundation locally and on this occasion,

2. help expand knowledge of how these conditions develop or are passed through the generations,

3. celebrate the achievement of reaching the biblically attested life span of 'three score years and ten' by doing something for others on this significant birthday,

4. having been given all these years more than baby Lily, contribute to the Foundation in her memory, as it promotes awareness not least among medical professionals, supports sufferers, and into the future enables prevention and treatment of this often debilitating condition, that perhaps I have had for thirty years or more.

Approaching the 64th bench I managed on Easter.Sunday.