1st January, 2020. This date will forever haunt us. This was the date that our beautiful little girl, Eva Grace Williams, was diagnosed with a rare and incurable form of cancer called ‘Diffuse Intrinsic Pontine Glioma’, or ‘DIPG’.
Eva battled for 12 months and 8 days, before finally having to rest.
For those who didn’t know Eva, she was a caring, lovable and fun little girl, with the most beautiful smile and the most amazing of hearts. Eva’s priority was always to help others, starting at home helping with looking after her brothers, but extending to her friends, for whom she couldn’t possibly do enough.
When Eva was diagnosed, we kept from her the prognosis of DIPG – no child should be told that they are going to die – and instead, we focused on trying to find ways to help her. No matter what, we were determined that we would find a miracle to save her life. When we began fundraising, Eva picked the name with us, and she agreed that any funds raised which we didn’t use for her treatment should be used to help other children in some way. Over the months that followed, that evolved in to also helping some of the incredible charities which have also supported her through this time. In typical Eva style, she still wanted to help others despite the battle she was facing every day.
During Eva’s final weeks, as her symptoms worsened, we saw our baby lose a part of herself each day. It may have been her infectious smile, her mobility, and eventually her voice, however her fight never stopped. Even on the evening before she passed away, Eva knew what she wanted – to play a game with her family. Despite her exhaustion, she played, and she loved it.
Though nothing will bring our daughter back to us, we made a promise to her that we would not stop our fight – after all, she didn’t. Eva’s legacy will be to fight for others as she did for herself, and to hopefully bring a smile to another child’s face, as she always wanted to do.
Eva may not be with us in body, but she lives on every day in our hearts and in our minds, and as far as we are concerned, she showed us what it truly meant to be ‘unbeatable’.
How We Help
We have made it our mission to continue the fight against DIPG, both by funding research programs, and by putting the smile on the faces of children with this terrible diagnosis.
When Eva was diagnosed with DIPG in 2020, we were told that there are no treatment options, other than radiotherapy, which sometimes offers a temporary relief from the symptoms.
What became clear was that there are many options, but none in the UK. Children in the US, in Europe, in Australia, in Israel, in Mexico and elsewhere DO have options, however many of these are far out of reach due to the excessive costs of the clinical trials, and without any support from the UK Government or from the NHS, most children are unable to access those treatments.
Our goal is to help raise funds, and support the launch of clinical trials in the UK, with the ultimate goal of finding a cure for DIPG.
Putting smiles on faces
Our other goal is to provide children with the opportunity to smile - something Eva was passionate about.
Children with DIPG often experience severe and aggressive progression of their symptoms, and making memories can be difficult. Eva kept her infectious laugh right to the end, but facial palsy took her smile from her.
We will provide children with gift boxes that we hope will give them something to smile about.
“You never know how strong you are until being strong is the only choice you have”