Alec Normand Fund

Alec's story

Thank you for visiting our page. Our son, Alec, was a gorgeous and adored boy who made the most of every day until succumbing to an inoperable brain-stem tumour in January 2008, aged nine. Alec had had a succession of what seemed no more than winter colds but, as soon as he developed a squint, he underwent an MRI scan in April 2007 which showed clearly the presence and location of the tumour. Treatment was provided by Southampton General Hospital, where, coincidentally, his grandfather, Colin Normand, was Professor of Child Health from 1970 to 1993. We were able to care for him from home throughout his illness, with the support of his fabulous school, Elstree, and, in the later stages, from the excellent Basingstoke hospital community nursing team.

Alec remained an active and enthusiastic participant in all aspects of home and school life up until his last few weeks, for which we were very grateful. He was a gentle boy, whose kind nature was noted by acquaintances of all ages, and had a keen interest in reading and music. Alec faced his diagnosis, treatment and subsequent decline with inspirational courage and good humour, as so many young children in his circumstances seem to do, and we were lucky to have had nine wonderful years with him.

As a family affected by the condition, we are keen to support research into the prevention and cure of childhood brain tumours. During the last months of Alec’s life, we set up a supporter fund with The Brain Tumour Charity (formerly the Samantha Dickson Brain Tumour Trust). For us, the purpose of the on-going fundraising is threefold: as an enduring way to celebrate Alec’s life; to raise funds for research into ways of preventing or treating this type of illness; and to provide a positive outlet for the huge number of Alec’s supporters and their greatly valued goodwill.

Many thanks from
Clare, Christopher, Oliver and Ursula Normand

About The Alec Normand Fund

We were delighted to get a call in July 2011 from Sarah Lindsell, the Chief Executive of The Brain Tumour Charity, to let us know that Alec’s fund had reached an incredible £100,000 since we started fundraising in 2007. This is far beyond what we had anticipated when we first set up the fund and is a reflection of the invaluable support we have had from so many people since Alec’s diagnosis

Alec would have been so proud of, and grateful for, all the individual stories, activities and donations behind this total, as well as their on-going effect in helping to prevent others suffering his fate. We have had a lot of fun along the way as well – from walking some stunning stretches of the South West Coast Path and holding giant tea parties at the local farm park, to busking on Cornish beaches – and we continue to be overwhelmed by the generous contributions of so many family and friends, as well as complete strangers, all inspired by Alec’s story. We chose to support The Brain Tumour Charity as brain tumours are the poorest-funded type of cancer, and the charity is the largest adult and childhood brain tumour charity dedicated to research in the UK.

The charity is run by an inspirational team with a highly professional approach, including to the selection and peer review of research projects, which is very important to us.

Critically, everything that they do is underpinned by the passion of Neil and Angela Dickson, Samantha’s parents and the founders of the charity. We can direct all of the funds raised in Alec’s name to specific projects and have supported two so far:

1. A genome-wide methylation analysis of oligodendroglial tumours (similar to the one Alec had) by Dr KoichiIchimura, University of Cambridge; and
2. The ongoing research work by the new dedicated Samantha Dickson Brain Tumour Research Centre at University College London.

It has helped us so much as a family to have fulfilled our promise to Alec through making this vital contribution to brain tumour research.

Our thanks go to all those who have supported and continue to support his fund.