Toby was born on 16th August 2016. He was perfect in every way and came home from the hospital the day after he arrived. He started to smile at just three weeks old. His hair grew and grew. He grew and grew. And he brought his parents, Verity and Nathan, so much happiness and love. But after an innocuous bump appeared on his forehead at six weeks old, followed by a number of small bruises, Toby was admitted to his local hospital.Toby's parents were told, in all likelihood, that their baby had a form of cancer. It was terrifying.

Toby was quickly and fortunately transferred to Great Ormond Street Hospital where, at just eight weeks old, he was diagnosed with a rare form of Acute Myeloid Leukaemia (AML). Toby's aggressive presentation of AML left the doctors with no choice but to start a toxic and gruelling course of chemo immediately. His parents were told to expect at least a six month stay in hospital. Toby initially responded incredibly well. An MRI before Christmas showed he was in remission and he wouldn't need a bone marrow transplant. However, he sadly relapsed on New Year's Day and faced terrifying odds and even more brutal treatment - another round of toxic chemo and then a bone marrow transplant. The pain for Toby was excruciating. But he did it. He carried on. And he smiled through it all. He fought so hard to stay. But in the end it wasn't to be and a chest infection took hold of his lungs and Toby couldn't fight it in time to beat it. His immune system had been weakened for so long because of the treatment.

Great Ormond Street Hospital did everything they could to help Toby. No stone was left unturned. Toby's family feel they owe the hospital so much. Not only did Toby receive world class treatment, the hospital became his much-loved home. Nothing was too much. They looked after Toby and they looked after his parents. And they did it with so much compassion and love. His precious room on Lion Ward was full of laughter, books, toys and magic.

Fundamentally, Toby's cancer was horribly rare. And the treatment too aggressive. It doesn't seem right that today, children are still dying from leukaemia or its treatment. It has to change. We need kinder cures. We need more reliable cures. And we need to give the doctors the research and tools they need to make this happen.

Losing Toby was unthinkable, unendurable and just agony. His parents don't want to see other children and parents suffer. They want to see a brighter future for children with cancer. 

Watching a child, who doesn't understand what is happening to them, battle and endure so much pain is impossible. Let's change the future. In Toby's name, for Toby and for all our children. Thank you so much for donating. 

Instagram:  @verityhs @nathantskinner #deartoby 

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