On 24 June 2020, "Team Azure" consisting of Anna, Gerry, Gary, Chelcie and myself will cycle 250 miles over a 4 day period from Venice to Milan in aid of Amy and Friends.
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, is one of the worlds oldest living people with CS, she has just turned 28 years old but she can't talk or walk and has a long list of illnesses including cancer.
Despite all of this, she is one of the most inspirational people I have ever met, she is always smiling and blowing kisses and despite being in constant pain, she is patient and kind and extremely loving to everyone she meets, especially the younger children suffering with CS.
Amy's sister Laura will be joining Team Azure on this challenge too and if any of you would like to take part please just let me know.
Please, please, please sponsor me? 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).