A Bramcote family have asked us to promote their fundraiser originally taking place on 16th and 17th January, but postponed by a fortnight due to tier 4 restrictions. Dylan and Oscar’s Mum, Joanne Ward, told us:
My Son, 13-year-old Dylan, is working to complete his bronze Duke of Edinburgh Award.
For his skills and volunteering sections he is volunteering for NF2 BioSolutions UK (registered charity number 1189618) so that he can raise funds for research into gene therapies for NF2 and awareness about the rare disorder.
Dylan is doing this by is fundraising for his “Walk for NF2” on 16 and 17 January 2021. He’s walking 50 miles on cold winter January days and this is a huge challenge for him.
This is a cause very close to him as his nine-year-old brother Oscar is fighting three cranial and four spinal tumours due to NF2. Oscar’s struggle has led Dylan to devote his energy to trying to make a difference for children affected by NF2 all over the world, including his brother.
In his own words, Dylan says that he wants to raise awareness and funds “so that more doctors can help us get a cure. I want to help Oscar and all the other children in the world affected by NF2 so they can grow up with better lives, but I know that it won’t happen without the money for research.
So, I decided that I could make a difference by volunteering for the charity and raising some money while raising awareness. I’ve got a few other events happening later in the year too”
Joanne told us:
I am proud of Dylan, he understands he can help others and change lives by volunteering.Our family’s hope is for a cure with gene therapy, so that is why we are supporting NF2 BioSolutions UK. We hope that Oscar can live the life he’s meant to and he can play football with Dylan and all his friends. The two boys love listening to music & playing games on the Xbox together, but Oscar is already suffering from hearing loss due to tumours.
I love both my children with all my heart, but NF2 is a cruel and debilitating condition in many ways. I will fight with passion until we get the cure that is so desperately needed, not just for Oscar, but for all the children and adults that are affected by NF2 all around the world. We will make an impact and make a difference to them and we will not stop until we achieve our mission.
What is NF2?
NF2 is one of over 7000 rare diseases & disorders, of which 1 in 35000 are affected and it is characterised by multiple tumours in the central and peripheral nervous systems, it causes a range of symptoms from Tinnitus, Deafness, Balance Dysfunction, Dry Eyes, Facial Paralysis, Seizures, Vocal chord Paralysis, Blindness, Skin Plaques, Foot or Wrist Drop, Club Foot & Muscle atrophy to name just a few.
There is no cure.
Who are NF2 BioSolutions?
NF2 BioSolutions UK are the UK charity arm of NF2 BioSolutions, a non-profit, patient led organization and our purpose is to increase awareness of NF2, connect patients for support, offer hope to patients and families and ultimately fundraise to advance gene therapy and immunotherapy for treatment or a cure to NF2.
Why is Dylan fundraising?
“My brother, Oscar aged 9 has NF2. My mum has got it too and he inherited it from her. Oscar has brain and spine tumours and must be monitored closely in case they grow. As the tumours grow, they will do more damage. Already he has a spine tumour that is damaging the nerves in his leg which means he has foot drop and is developing a club foot. He will need surgery in a few years, but the damage has already been done, they can’t remove the spine tumour though as its too risky.
Our hope is for a cure with gene therapy that is why I am supporting NF2 BioSolutions UK, so Oscar can live the life he’s meant to and he can play football with me and all his mates. Oscar has a low level hearing loss too, I don’t want him to become deaf though cos we enjoy playing together and listening to music together, but we won’t be able to do that if he’s deaf and that’s scary and sad.
Not many people have heard of NF2 either, so I want to raise awareness then maybe more doctors can help us get a cure.
I want to help Oscar and all the other children in the world affected by NF2 so they can grow up with better lives, but without the money for research then it won’t happen.
So, I decided that I could make a difference by volunteering for the charity and raising some money while raising awareness. I’ve got a few other events happening later in the year too.”
Our social media pages are:-
Our fundraising page is: https://uk.virginmoneygiving.com/DylanWard2