Weʼve raised £20 to To raise funds and awareness for Vanishing White Matter Disease, By jumping out a plane.
- Health and medical
- Time left
- Funded on Sunday, 27th November 2016
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.
Vanishing White Matter is an extremely rare genetic, degenerative, life-limiting disease that affects mostly children. With diagnosis commonly between 2-6 years of age, prior to which they have developed normally. This sudden, unexpected, rapid deterioration has a devastating effect on the child and their family. With the loss of the ability to walk, further deterioration of motor skills, losing the ability to talk, eat, followed by blindness and deafness leading to eventual death.
Deterioration can be hastened by any head trauma, fever, illness, and stress. Vanishing White Matter affects 1 in 40 million, with less than 200 cases worldwide, hence the minimal press on the condition.
This site was set up as a result of a beautiful little girl, Bella, developing the condition at 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 at the local play center. Not to forget to play with all her toys at home as little girls do. Please look at that cute face and tell me you don't melt?!
Vanishing White Matter research needs your donation today to allow research to progress at a faster rate. It may only affect the few, 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 gradually struggle to walk normally but never will again, an ability is taken for granted, gone in the blink of an eye. We would all live for every moment if we ever new, rather than focus on the materialistic aspects of life.
Updates appear here
Jakki Slack started crowdfunding
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Oct 28, 2016
Cannot wait to see the pictures! You go girl! Such a brace thing to do wishing you the best of luck xx
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