Noah and Gracie were diagnosed with a rare genetic disease called Vanishing White Matter Disease, a form of Leukodystrophy effecting perhaps as little as 250 people worldwide.

Noah is physically disabled but the pleasure and stimulation he gets from being outdoors is something we want to facilitate at home. This will require investment in equipment and work to adapt the home and garden but in a nutshell - that’s our goal!

We’d love you to be part of making this good thing happen.

You can read more on the story of Noah and Gracie below, as told by their Dad Greg…

Noah (10) was diagnosed with a rare genetic disease called Vanishing White Matter Disease, this is a form of Leukodystrophy. Noah was almost 3 years old by the time he was diagnosed. Almost a year to the day from Noah’s diagnosis his little sister Gracie (7) was also confirmed to have the same disease.

To date Gracie has shown few outward signs of progression of the disease however Noah’s has taken hold much more aggressively
Long term the disease affects the white matter that protects the brain and doctors say eventually the white matter will disappear, Noah is very physically disabled and his cognitive development has been affected. His life expectancy is also reduced to teenage years.

Noah’s world is a lot smaller now than what it was even a year to 18 months ago, a lot of his time now is spent inside at home, we have a desire to keep him as stimulated as possible. He has spent some time up at the NI Children’s Hospice, there they have special mobility equipment that helps him get around both inside and out in their garden in comfort and relative ease also they have some special sensory equipment that stimulates the senses, we have found this beneficial and if possible would love to be able to replicate some of this at home.

http://ulf.org/vanishing-white-matter-disease/