Someone Special: Iwan Clarke

Iwan for blog

By the nature of fundraising, we pick a charity which means something to us and often, this is because of a connection to a loved one. This is why Virgin Money Giving offers the Someone Special functionality, whereby fundraisers can create a page enabling a community of people to fundraise together with Someone Special in mind, whether this be in memory of someone who has passed away, someone who is recovering from illness or injury or for someone who is going through treatment.

In 2009, Iwan Clarke was diagnosed with Philadelphia positive ALL (Leukaemia). Despite initially responding well to treatment and the Bone Marrow transplant he received from his brother, Samuel, his cancer journey has been a rollercoaster. Iwan is a very private boy and initially did not feel happy sharing his story. However, when the only option left to the Clarke family was self-funding an £150,000 “revolutionary” treatment to try to save Iwan’s life, it became apparent that their only chance was to involve friends, family and the public in their fundraising.

Relapsing

Even when numerous treatments are available to treat a disease, recovery is not always smooth sailing. Iwan was cancer free for two years after his initial treatment and the bone marrow transplant from his brother. However, as is all too common in cancer survivours, he relapsed in 2012. At this point, NHS treatments were still available to Iwan and he went on to have a further bone marrow transplant from an unrelated donor before relapsing again.

In 2015, after attempting all accessible treatments, the Clarke family  were told that their best chance was to keep the Leukaemia at bay with chemotherapy, but that there was no guarantee that this would work long term. Hearing the news that there is no long term solution to save your child’s life is unimaginable for anyone who has not ben through it themself.

Hope

Throughout his illness, Iwan’s mother Helen had been following the story of a young girl in the United States who was going through exactly the same illness as Iwan. Shortly after the devestating news that there was no cure available to Iwan in the UK, the girl Helen had been reading about underwent a revolutionary new treatment, CAR T Cell Therapy. She says “This was it – we had to get Iwan this treatment no matter what“.

Sadly, the Clarke family’s application for NHS funding was turned down, leaving their only option to raise the £150,000 necessary to pay for the treatment themselves. It was at this point that they realised that they were not going to be able to save Iwan alone, and so Iwan Clarke’s Virgin Money Giving page was born. Helen tells us;

“In September 2015 we set up our fundraising campaign and had a meeting with Simon Loyns of the Ben’s Heroes Trust who had been introduced to us through our Clic Sargent social worker at Sheffield Childrens Hospital.  Ben’s Heroes Trust gave us advice on fundraising and allowed us to use their registered charity details to collect donations for Iwan’s treatment and suggested that we opened a Virgin Money Giving page as an easy way for people to
donate to our cause and be able to receive Gift Aid on donations.”

Fundraising

The Clarke family opened a Facebook page – USforIwan, to provide as many people with details of what they were doing and why.  Helen says that the response the family received was “totally amazing“. She added

“So many people have got involved, many of whom we do not know personally but will be eternally grateful for everything they have done.  Old College friends who I haven’t seen for over 25years, living in the opposite side of the country getting in touch and organising events to raise money, the ‘fishing’ community (my husband is a keen fisherman) have been outstanding in their fundraising and Iwan’s old school friends and their parents and teachers and family and friends have gone the extra mile to help and raise the funds to get him to America.  We are totally overwhelmed by all the support we have received.”

 

iwan for blog 2Helen tells us that throughout the fundraising, they have remembered to be mindful of the feelings of the person at the centre of it all, Iwan. Until the point that it was necessary to share his story, Iwan had never spoken much about his illness, wanting to be ‘like everyone else’ and not defined by his illness. Helen reminds us that “he has been through so much over the last six years that no child should have to go through“.

Today

Thanks to an anonymous donation made directly to the Seattle Children’s Hospital, the Clarke family successfully reached the £150,000 target and Iwan has now completed phase one of the treatment. Helen tells us

“We are currently waiting to go back to Seattle so Iwan can get the cells back and be on the road to a much brighter future, one he desperately deserves, but it wouldn’t have been possible without everyone who got involved and donated.”

Someone Special

Iwan Clarke’s fundraising is a perfect example of how a Virgin Money Giving Someone Special page can change, and in fact save, a person’s life. This way of fundraising allows friends and family to come together as a fundraising community, but also allows people touched by the story to join in and do something incredible for a person who desperately needs it, in a way that works for that one special person.

If you want to fundraise with Someone Special in mind, whether this be in someone’s memory, for someone who is going through treatment or for someone who is in recovery, you can do this by setting up a page today.

 


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