My 10 year old son plays Rugby League & the sister of one of his team mates, Bella Morris, suffers from Vanishing White Matter Disease. I will be cycling more than 1000 miles over two weeks this summer visiting all 12  Superleague Rugby clubs from Perpignan in Southern France to Wigan in Lancashire to raise both awareness of this dreadful disease and money to fund research into combatting it. 

I am raising money for both Derian House Children's Hospice in Chorley, Lancashire who provide care and support to children like Bella, suffering life limiting conditions, and their families and The Rainbow Dream Charity which helps to fund vital research into Vanishing White Matter disease.

Bella has already benefitted from the fantastic care provided tirelessly by the amazing people at Derian House and they desparately need charitable donations to continue providing this much needed service.

The video here -  https://youtu.be/iMf-cnzhjok explains how this disease affects families. Please watch it.

Imagine waking up on any normal day to find your precious little son or daughter, developing as you would expect, but then they develop a cold, coughing and sneezing. Today though, that cold is going to tip the balance and awake the heartbreaking first symptoms of Vanishing White Matter. 

First you notice they're unsteady on their feet and you start to worry and seek medical advice. They gradually struggle to walk normally, and will never regain this ability we all take for granted, gone in the blink of an eye. From there, a snowball effect that won’t slow. Your child slowly deteriorating with a feeling of helplessness and despair as there is currently no cure, only support and management of symptoms. 

Vanishing White Matter is an extremely rare genetic, degenerative, life limiting disease that affects mostly children. Diagnosis is usually received when the child is between 2-6 years of age, prior to which they have developed normally and reached most common milestones. This sudden, unexpected, rapid deterioration has a devastating effect on the child and their family. Usually characterised with an initial loss of the ability to walk, Vanishing White Matter also leads to a further deterioration of motor skills, loss of the ability to talk or eat, followed by blindness, deafness and eventually leading to death. Currently there is no cure. Research is currently being conducted into Vanishing White Matter so that more can be learnt about this life limiting condition and hopefully one day a cure can be found. 

So please support us to help Derian House make a better life for children like Bella and their families. 

Thanks for taking the time to visit my JustGiving page.

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.

Thanks for taking the time to visit my JustGiving page.

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.