Frank, our beautiful son, was diagnosed with Ewing's sarcoma in 2016 when he was 11 years old. He was just looking forward to going to secondary school and beginning the next phase of his life. We had no idea he was ill. He was loving life, playing loads of sport and enjoying spending time with his friends. He was a normal 11 year old boy. He was popular, sociable and loved having his friends around him.

What followed next was unimaginable. Frank had 12 months of utterly horrendous treatment. You can't imagine in your worst nightmares how terrible it was and how strong a character Frank had to be to get through it. It was completely and utterly heartbreaking to watch. We would have taken his place in the blink of an eye.

Frank's treatment included 5 days of chemotherapy, non-stop through a drip, every 3 weeks, 30 days of Proton therapy in Oklahoma City, USA and an absolutely horrific 8 hour operation to remove the tumour and half his pelvis. Even though the chemo ravaged his little body he managed to stay fit and well between treatments and spent the least time in hospital of any child his oncologist had ever treated. 

After his operation Frank was in agony for weeks and he had to learn to walk again. He worked so hard and built up a great rapport with his wonderful physio Tom. He was determined to get through it and move on. He started swimming and playing a bit of golf again. He used to dream that he could run. After 12 months Frank went in to remission and he started to set rebuild his life.

Despite everything that had happened to him he was happy, positive and still loved life. He especially loved his friends and family. He was popular, sociable, mature, kind and very funny. His friends tell us that they always knew when he was at school because he lit up the room when he walked in and made everyone laugh. They say he was always kind. That makes me very proud.

After 5 months we found out that Frank's cancer had returned. We were told that there is virtually no chance of survival if Ewings returns so quickly and that there is no standard treatment, it's a case of trying different drugs and seeing what happens. We were told that Frank probably had a maximum of 18 months to live.

Franks started more endless rounds of chemotherapy and radiotherapy. He was so private about his illness that he didn't tell anyone that the cancer had returned. Most of his friends didn't know for a long time. 

We prayed for a miracle.

15 months later, at Christmas 2018, Franks health was failing fast and we knew time was running out. On 9 February 2019 the unthinkable happened and our wonderful boy passed away at home. He was just 14 years old. It's still too painful to imagine what on earth was going through Frank's mind in those last 2-3 weeks. He never wanted to discuss it with us but he wanted us to know how much he loved us.

We now know that treatment for Ewings hasn't improved in 40 years as a direct result of lack of funding for research. This is a disgrace. Imagine how you'd feel if it was your child.

Bone cancer is a brutal and cruel cancer but receives no government funding and the main UK cancer charities allocate virtually nothing - just 0.02% of everything they raise goes to all bone cancers, hardly a penny to Ewings. This has to change.

Frank's life was worth so, so much more.

There's only one thing I want for my birthday and for every other birthday, and I'll never get that. The way we get through the days is by working tirelessly to raise money so that other young people don't have to go through the terrible things Frank went through and so that other families don't have to suffer as we do, day in, day out. Our hearts are broken for ever. We didn't realise how happy and how lucky we were. Our lives could have been so good.

Please help me by giving what you can and supporting Frank's Fund in the future.

www.bcrt.org.uk/FranksFund

Follow Frank's Fund on social media - Fabulous Frank.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.