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.
Deterioration in sufferers of this disease can be hastened by any head trauma, fever, illness and stress, so life for a child and their family can be one full of anxiety. Vanishing White Matter affects only 1 in 40 million, and with less than 200 cases worldwide it's no surprise that there is such minimal press on the condition. If you wish to read more about Vanishing White Matter feel free to browse through our page on this condition where you can find information taken from different sources and links to other websites.
Our charity was set up as a result of our beautiful little girl, Bella Morris, being sadly diagnosed with this condition when she was two and a half years of age. Bella is a much loved little girl, who enjoys to smile for the camera, play with family and friends, to go for a swim and play with her favourite toys including Elsa and Anna like most little girls do and having plenty of cuddles. Fundraising began through a family run Facebook page with an attached Go Fund Me page named "Saving Bella Morris". Due to the success and support of so many amazing and wonderful people over £20,000 has been raised to date. Consequently this led on to the development of The Rainbow Dream Charity which was officially recognised by the Charity Commission on the 25th November 2016, an organisation which has been set up to raise awareness of this awful disease, and raise funds for research into Vanishing White Matter, so that one day, we may have a treatment/cure for this disease and no family will have to go through this heartbreak again.
Research is currently being undertaken into Vanishing White Matter so that more can be learnt about this life limiting condition and hopefully one day a cure can be found. This research needs your donation and awareness so that it can progress at a faster rate. This condition may only affect a few children, but just think for one moment, and just imagine waking up to 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 isn't every other day, for today that cold is going to tip the balance and awaken the heartbreaking first symptoms of Vanishing White Matter. First you notice there unsteady on their feet and this is when you will start to worry and seek medical advise, they will gradually struggle to walk normally, and will never regain this, an ability taken for granted, gone in the blink of an eye. We would all live for every moment if we ever knew, rather than focus on the materialistic aspects of life.
From here on in an emotional journey begins, with a vast array of health professionals talking to you about so many aspects of your child's life and health, tests ensue and an eventual diagnosis, 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. He/She can no longer walk followed by loss of motor skills, the ability to talk is lost, the ability to feed, with progression leading to loss of vision, speech and hearing. Your angel becoming bound to their bed until eventual death occurs generally within 5 - 10 years of diagnosis as a result of the inability to fight off reoccuring infections.
Be blessed that this is not your journey rather a true story you are reading, happening again and again. Or if this is your story find strength in our mutual understanding and sympathy, you are not alone. Please if this has touched your heart lets put an end to the suffering of those handed this devastating blow. So please support us in our vision to make a better and more promising world for Vanishing White Matter sufferers and their families. Professor Orna Elroy-Stein based in Tel Aviv is making promising progress towards a treatment and with your donations we can support her to progress this research at a faster rate.
Please Please help us to raise awareness of Vanishing White Matter and all those other children out there diagnosed or to be diagnosed in the future.
Accept our gratitude and heart felt thanks for reading this page and any donation you can afford. Also please share and spread the word and if you feel inclined arrange your own fundraising event.
Thank you xx