Victory 4 Vincent
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.
Edel, Jan, Julie & Nicola
Just to keep everyone updated on where we are at with Victory4Vincent!!! We have been working really hard fundraising for the last 15 months. The support of family, friends, neighbours, teachers, parents from the school, strangers who have become friends has been amazing!
The support for the variety of fundraising events people have done to help Vincent get the medication he so desperately needs has astounded us! We would not be where we are without everyone's support and generosity. A heartfelt THANK YOU to everyone!
We are definitely on our way to getting the funds needed but we still have a way to go! We really need to push forward and try to get to the finish line so we can access the medication for Vincent to keep him moving!
Any support, donations or fundraising/guidance is very much appreciated.
Can we just ask that you might share Vincent's story and keep checking in for updates on Vincent's Facebook page: Victory4Vincent or the website: victory4vincent.com
Here is an update of Vincent's story so far.
So our trip to Newcastle I guess went well as the Doctor had said if Vincent met criteria for a trial she would fight for him to take part in it. Although this was good news, we felt very down as trials are not happening quick enough. Unfortunately time is not on our side and as every day goes by and muscle tone gets lost or damaged this can never be reversed :-(
We went from being down to receiving the best news we have ever received, we were told that the drug we are looking to get could now be given to Vincent in Temple Street at a cost of €440k per year plus shipping costs every 13 weeks as they will not give a one off years supply. I am hoping we will only need to fund a years supply whilst waiting on European approval, however this is not guaranteed. How amazing will it be not to uproot the whole family or go through the terrible reality of what is actually involved in clinical trials for the boys, regular muscle biopsies being one!
I have been in talks with local councillors,TDs and Senators and also recently met with the Taoiseach (an unexpected meeting for him lol) Health Minister Simon Harris is now aware of the situation and Iam hoping they can help with funding. So !
So I really need to push fundraising, and get these funds in asap. Can you help me provide my precious amazing little boy to get this treatment? It will slow down the progression of DMD giving him a longer chance at being a normal little boy, giving him the strength to walk, run and play with his pals for longer than what is now expected. And most importantly delaying problems with the lungs and heart
Already this week I had to hold and comfort a distraught little boy who sobbed his heart out at not having the strength to be able to play and keep up with his friends at a birthday Party. Maybe a small thing for us but HUGE for a little boy, it is like the end of his world. No 6 year old should have to consider giving parties up because they are physically not able for them.
Please can you help? I am looking to put a volunteer fundraising committee together. Whether you are experienced or not in this sector. Please if you have an hour or two to spare a month and would like to make a huge difference in a little boys life whilst also making new friends , and drinking plenty of free tea and coffee
Please pm me for further details.