Henry's Story

Henry is our son. He loves Disney, cars and lions. Henry is forever four. Two and a half years ago we noticed changes in Henry - he wasn't himself and became unwell. What was at first, and a further five times, dismissed by doctors as nothing to worry about, soon became our living nightmare. Henry was rushed to John Radcliffe hospital in Oxford, an exciting adventure for him with flashing blue lights and sirens but our most frightening journey ever. Our precious only child had Stage 4 High Risk Neuroblastoma and was battling for his life.

Over the next two years, alongside gruelling tests, painful treatments and surgery, Henry fought as hard as he could. Yet, through all the tears, doctor visits and hospital stays, Henry never stopped smiling. His happiness, strength and bravery will always be remembered.

Henry's happiness was infectious and brought our community together. Friends and family started The Henry Allen Appeal in the hope of raising money for treatment abroad - even though the relapse rate for Neuroblastoma is 80% there is currently no relapse protocol in the UK. Through fundraising events such as a city wide penny drop, sky diving, fun days, a charity ball and many more events, The Henry Allen Appeal raised an amazing £135,000 in just under a year.

The support from the people of MK and beyond, even as far as Spain and America, was astounding and we were overwhelmed by their love for our little boy. Such was their admiration of his bravery Henry was nominated for two awards at the MK Pride awards. Unfortunately Henry was taken ill and was unable to collect his 'Highly Commended' award for 'Young Achiever of the year'. The Appeal Team, following a nomination for 'Fundraiser of the Year', were once again taken aback by the amount of support for Henry and his Appeal when they won the 'People's Choice' award.

Henry's condition deteriorated rapidly and there wasn't time for us to seek alternative treatment. Henry wanted to come home and we made this wish happen for him as we spent our last days together back at home making memories. Henry wanted fireworks and a huge display was organised for him along with Christmas with real snow, Santa, Christmas dinner and donkeys in the garden. We were supported at home by the community care team but our time together was so short. At 3.15pm on Sunday 20th October 2013 our beloved son gained his angel wings.

We wanted his funeral to be a celebration of his life and that is exactly what it was with all his favourite things. The public lined the streets to wave goodbye to our superhero. Finding the words to describe our days without Henry by our sides is impossible but we continue to be inspired by our little man on a daily basis.

Keeping in mind just how much Henry loved to make people happy and see them smile, we wanted to continue to work alongside the community in his name. In February 2014 Mark and I set up The Henry Allen Trust which aims to support local oncology children from ages 0-18 and their families. We have promised that the Trust will be about "Henry's family bringing happiness to your family.

We will do this in a number of ways including:

• Fundraising for treats and wishes to provide memories for ALL immediate members of a family following a cancer diagnosis in a child or children.

• Ongoing support and guidance for families from point of diagnosis.

• Working closely with local and shared care hospitals and community teams to improve processes and care programmes. Raising awareness by educating staff and nurses on best practice from the point of diagnosis.

• Assisting in the production of 'books' aimed at families to help them to understand what will happen during their oncology journey.

Fundraising events will take place throughout the year and we welcome members of the public to help support us by holding their own events, attending one of ours or simply by donating. We will always make sure our priorities lie with the immediate families whose lives have been turned upside down and support them however we can. Most importantly for us, we want to help those families create special memories not just for the child fighting their bravest battle, but for their parents, siblings and extended family.

Henry's life may have been short, but his impact on this world has been everlasting. Mark and I are determined to offer somewhere for people to turn to for comfort, retreat and support when they most need it. After all, what is life unless you Hope, Dream, Believe... An army of volunteers made up of friends and family will help us to create this legacy for our little boy and we hope you will help us too. As said at his celebration of life...If not for me, for Henry.

Dawn, Mark and Angel Henry xx, Let's Do This....Thank you!