On 22 June 2022,  a group of us will cycle 250 miles over a 4 day period from Venice to Milan in aid of Amy and Friends. This ride should have taken place in 2020 but was delayed due to Covid-19, so we will be 2 years on but we can't wait to finally take on this challenge!

Amy and Friends is a registered charity that supports children and families who suffer with Cockayne Syndrome/TTD or related DNA repair disorders. These disorders are rare, inherited diseases. They cause poor growth, developmental delay and progressive neurological problems. The current average life expectancy for these children is 8 years and currently there is no treatment or cure! The charity supports over 500 families weekly and works closely with the medical profession. They have co-written 2 medical papers and also helped form a care pathway with the NHS and for doctors overseas.

We will also be joined by some of the family members of those children with Cockayne Syndrome as well as some of our close travel partners, Azure clients, family and friends.

Amy Hughes of Amy and Friends pictured above with me,  was one of the worlds oldest living people with CS. Sadly, Amy passed away on 1 January 2020. Amy was a gorgeous, she was mischievous, funny, happy and extremely loving young woman. She suffered for many years and faced huge challenges in her short life including losing her voice and eventually not being able to walk. She was always in pain and  suffered a long list of awful illnesses including cancer.

Despite all her suffering, she was always smiling and blowing kisses. She was patient and kind and extremely loving to everyone she met, especially the younger children suffering with CS. 

Amy's sister Laura will be joining me on this challenge too and if anyone else would like to join us, please just let me know.

If you are in a position to sponsor me, even just a few pounds, your support would mean the absolute world to me and all the families and children affected by this awful disease!

Thank you so much.

All my love Jayne xxx

(Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity).