Jami (pictured) was born with a rare and fatal neurodegenerative genetic birth defect - Cockayne Syndrome. Cockayne Syndrome (CS) is a devastating condition. CS children suffer from premature aging, growth failure, impaired nervous system development, sensitivity to sunlight, eye disorders and deafness.

Jami is the step-grandaughter of very close friends who live in the US; the step-daughter of my husband's godson. We met Jami last year in Maryland, near Washington DC, and she and I bonded over the fact that we both wear glasses. She is an adorable little girl with a limited life expectancy. CS is such a rare disorder that there are no case studies. You can find some information about the disorder online and there is at least one UK charity, but research into the syndrome is severely underfunded, due to its rarity.

Our friends, together with Jami's mother and others, have set up a not-for-profit organization; the 'National Initiative for Cockayne Syndrome' (NICS), and they organize fundraising events in the US, in order that children like Jami - worldwide - might be saved in the future. I promised to do my bit on this side of the Atlantic.

Any donation, however small, would be greatly appreciated. Thank you.