Darwin - Fighting for every day. MLD can’t stop me
Donation protected
UPDATE: We are making a push for a van! An accessible wheelchair van will cost around $40,000 for our family. Building in funds for registration, medics costs and other goals listed in the campaign, we have set our second campaign goal of $70,000. Let’s get this kid some wheels!
Darwin is a 6 year-old with the most joyful laugh, soul of a thousand-year-old poet, and a heart full of adventure. He also happens to have the extremely rare genetic condition Metachromatic Leukodystrophy (MLD).
During the pandemic, Darwin's genetic condition was triggered when he caught COVID in 2021, and progressed rapidly. By the time his family could get consultations with specialists around the world, it was too late for Darwin to benefit from any of the new gene therapy that exists for persons whose MLD is caught early. In a matter of months, this "typical" little boy lost the ability to walk, talk, draw and clamber through the outdoors. He now requires round-the-clock attention and specialized equipment. Meeting Darwin’s special needs is extremely expensive, and his parents are unable to fully afford the astronomical cost of his condition.
Although Darwin's prognosis is terminal and short-term, his family and friends are determined to make his life the best it can be! Darwin’s 7th birthday is coming up on April 27th - will you help us make his birthday extra special by fulfilling our wish for a wheelchair van?
With all the challenges life has thrown his way, Darwin remains his joyful self. Everyone who meets Darwin is struck by his peels of laughter, sparkling eyes, wiggly and exploratory disposition. We want to make sure he has not only what he needs, but that his spirit is supported in doing all he can do.
A wheelchair van with a ramp will ensure the variety of equipment he needs to fully access his environment can come with him anywhere he goes! Like many families, Darwin has two homes and needs his equipment to go back and forth. A van would even make it possible for Darwin to bring his friends along for a ride. Funds will also help provide stability for him in his home, and ensure he has consistent access to joyful opportunities (for example, we would love to take him to Morgan's WonderLand in TX). Any additional funding will support the costs of medical care and accessible equipment.
This little boy is everything to a lot of people and we feel blessed to have him. If he will only be on this Earth for a short time, we are grateful we get that time with him. Every day is an opportunity to be a blessing to him.
We have already been amazed by the incredible outpouring of generosity and support that the community has shown to Darwin. Thank you to everyone who has donated or sent a kind word his way!
During the pandemic, Darwin's genetic condition was triggered when he caught COVID in 2021, and progressed rapidly. By the time his family could get consultations with specialists around the world, it was too late for Darwin to benefit from any of the new gene therapy that exists for persons whose MLD is caught early. In a matter of months, this "typical" little boy lost the ability to walk, talk, draw and clamber through the outdoors. He now requires round-the-clock attention and specialized equipment. Meeting Darwin’s special needs is extremely expensive, and his parents are unable to fully afford the astronomical cost of his condition.
Although Darwin's prognosis is terminal and short-term, his family and friends are determined to make his life the best it can be! Darwin’s 7th birthday is coming up on April 27th - will you help us make his birthday extra special by fulfilling our wish for a wheelchair van?
With all the challenges life has thrown his way, Darwin remains his joyful self. Everyone who meets Darwin is struck by his peels of laughter, sparkling eyes, wiggly and exploratory disposition. We want to make sure he has not only what he needs, but that his spirit is supported in doing all he can do.
A wheelchair van with a ramp will ensure the variety of equipment he needs to fully access his environment can come with him anywhere he goes! Like many families, Darwin has two homes and needs his equipment to go back and forth. A van would even make it possible for Darwin to bring his friends along for a ride. Funds will also help provide stability for him in his home, and ensure he has consistent access to joyful opportunities (for example, we would love to take him to Morgan's WonderLand in TX). Any additional funding will support the costs of medical care and accessible equipment.
This little boy is everything to a lot of people and we feel blessed to have him. If he will only be on this Earth for a short time, we are grateful we get that time with him. Every day is an opportunity to be a blessing to him.
We have already been amazed by the incredible outpouring of generosity and support that the community has shown to Darwin. Thank you to everyone who has donated or sent a kind word his way!
Thank you to the Bramber Green Quilters, in Greenland, NH, who made Darwin this beautiful dinosaur quilt!
Special thank you to Delta for the star treatment with Darwin needed to travel last!
Organizer
Sarah Revels
Organizer
Portsmouth, NH
