On Sunday 13th June I will be turning 40!!!  A milestone that my late husband James didn't reach, after tragically losing his life in a work accident.  So in honour of James, and to celebrate how precious life is at 40, on Sunday 27th June 2021 my partner Mark and I are going to walk the 40 mile "Coventry Way" in one day to raise as much money as we can to support a charity very close to our hearts....

My six year old daughter Evie has a rare chromosome disorder (16p.11.2 microdeletion), which affects several areas of her life. She struggles with learning, speech, understanding, mobility, anxiety and many other areas, which impact her every single day. However, she is the happiest, bravest little girl who perseveres and never gives up despite how hard she finds things. 

Whilst approximately 3 in 10,000 people are diagnosed with this condition there is little known about 16p.11.2 and other rare chromosome disorders. A small, charity called Unique is dedicated to supporting families in the UK, but so many more families need help and much more research is needed into understanding how these unique children can live the best life possible.

This is why we are taking on the extremely tough challenge of walking 40 miles in one day! Your help, support and important donations would mean the world to us and will help Unique to help children like Evie and their families.  Here is some more information about this fantastic charity...

Unique is a small charity, providing much needed help and information to families who have children born with rare chromosome and gene disorders. Each year many hundreds of babies are born with these disorders, caused by parts of one or more of their chromosomes missing, added on or rearranged, as well as changes in single genes. They are often born sick and severely learning and/or physically disabled, unable to walk or talk and this can put lots of stress and strain on their families. Some, however have relatively mild or no symptoms and only find out they have a chromosome disorder when they try to have children of their own and for example experience multiple, heartbreaking miscarriages.

Although rare, collectively the disorders are more common than even Down’s Syndrome. Doctors, however often have little knowledge about them, leaving parents and carers feeling distressed, isolated and confused. This is where Unique comes in, answering their manyquestions and giving them the help they need. Unique’s services include:

• A ’Listening Ear’ telephone and email help service – the first point of contact for parents, doctors and other professionals
• Medically-verified information guides to specific rare chromosome disorders, a resource not available anywhere else
• Events such as conferences, study Days for parents and doctors to learn more about the disorders and family days to bring families together to relax & have fun
• Our family matching service which puts families in touch with each other so they can help each other through the difficult times.
• A welcome pack of resources to help them in their daily lives
• A specialist website and a regular members magazine
• A network of over 200 local volunteer contacts, helping families in their own area

New technology means lots more chromosome and gene disorders are being discovered all the time. More families than ever are receiving diagnoses and demand for our services is increasing very rapidly. Many families require additional support as they are extremely worried about whether their child’s rare disorder makes them more susceptible to the effects of Covid-19. We now support just under 10,000 UK families, part of a global network. As no other charity does what Unique does, our services are under greater pressure than ever before.