Victory 4 Vincent
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Facebook Vincent Lyons - His fight against Muscular Dystrophy Duchenne
Dear family, friends & well wishers,
On January 19th our friend's world fell apart when their only son, Vincent, was diagnosed with Duchenne Muscular Dystrophy (DMD). Vincent is 6 years old and is a very caring, funny, intelligent little boy. He lives in Dublin 15 with his parents, Vivien and Alan, two sisters and dog, Bella. He has a huge passion for dinosaurs and loves going fishing with his dad. His dream in life is to become an archaeologist. We really want this dream to become a reality for Vincent.
Boys with DMD, like Vincent, do not make the dystrophin protein in their muscles. Due to this missing protein, muscle weakness increases overtime. Eventually complications occur with the heart and lungs. Unfortunately there is no cure for DMD. At present, there are no treatments available in Europe for Vincent's specific type of DMD as he is missing exons 45-50.
In late 2017 the family received the great news that a drug that will benefit Vincent is available to ship to Ireland and Temple Street Childrens Hospital has agreed to administer it.
The family are absolutely over the moon with this news and are on a mission to get this treatment for Vincent as soon as possible! The drug will potentially lessen the severe muscle weakness. Time is of the essence for Vincent! It is vital he receives the drug while he is still walking, to achieve maximum effect.
However the cost of the medication is currently €441,000 plus shipping costs. The medication can only be shipped every 13 weeks. There is no finanical assistance for this and the family have to raise all the costs.
All monies donated will go towards getting Vincent the medication as soon as possible.
Nevertheless, Vincent will need treatment for the rest of his life, so this is just the start of a long journey.
Please help Vivien and Alan give their only son the best chance at life, by helping him get the treatment he needs and deserves.
Many thanks,
Edel, Jan, Julie & Nicola
www.victory4vincent.com
Dear family, friends & well wishers,
On January 19th our friend's world fell apart when their only son, Vincent, was diagnosed with Duchenne Muscular Dystrophy (DMD). Vincent is 6 years old and is a very caring, funny, intelligent little boy. He lives in Dublin 15 with his parents, Vivien and Alan, two sisters and dog, Bella. He has a huge passion for dinosaurs and loves going fishing with his dad. His dream in life is to become an archaeologist. We really want this dream to become a reality for Vincent.
Boys with DMD, like Vincent, do not make the dystrophin protein in their muscles. Due to this missing protein, muscle weakness increases overtime. Eventually complications occur with the heart and lungs. Unfortunately there is no cure for DMD. At present, there are no treatments available in Europe for Vincent's specific type of DMD as he is missing exons 45-50.
In late 2017 the family received the great news that a drug that will benefit Vincent is available to ship to Ireland and Temple Street Childrens Hospital has agreed to administer it.
The family are absolutely over the moon with this news and are on a mission to get this treatment for Vincent as soon as possible! The drug will potentially lessen the severe muscle weakness. Time is of the essence for Vincent! It is vital he receives the drug while he is still walking, to achieve maximum effect.
However the cost of the medication is currently €441,000 plus shipping costs. The medication can only be shipped every 13 weeks. There is no finanical assistance for this and the family have to raise all the costs.
All monies donated will go towards getting Vincent the medication as soon as possible.
Nevertheless, Vincent will need treatment for the rest of his life, so this is just the start of a long journey.
Please help Vivien and Alan give their only son the best chance at life, by helping him get the treatment he needs and deserves.
Many thanks,
Edel, Jan, Julie & Nicola
www.victory4vincent.com
Organizer
Nicola Colmey
Organizer
