My main reason for wishing to raise money - our Tom

Tom, our son, is the main reason for wishing to raise money for these two charities. If you would like to read a bit more about Tom, the article below was published in 2005 in the Down's Syndrome Association Journal.


We are so proud of our son Tom and thought you may like to hear a little bit about him.

Tom was born in April 1997, delivered by emergency caesarean, and weighed only 3lbs 12oz, despite having gone full term. Within a few days it was confirmed that Tom had Down’s syndrome, as well as having congenital heart disease, (AVSD and Fallot’s Tetralogy).

Our resolve just to get on with it, was shaped by Jamie, Tom’s big brother. His love for Tom was unconditional, Tom was his baby brother; although Jamie was also fascinated by the array of cables and tubes that came with his brother, and the fact that he was in a glass box, (an incubator).

Over the years Tom has frequented, & never willingly, a number of the country’s top medical facilities including open heart surgery at Harefield, & treatments at the Royal Brompton and latterly at Great Ormond Street. Tom has also been a solid contributor to the pharmaceutical industry, taking up to 7 different medications, some 3 times per day.

We hope that we are not painting too black a picture here, as Tom certainly enjoyed life to the full, and lit up the lives of those around him.

Trips around Sainsbury’s were great fun, with Tom sitting in the basket, laughing & joking. Tom tended to create a tidal wave of smiles and laughter wherever he went, as others were taken by his infectious joy.

Tom had a real slap-stick sense of humour, going into fits of giggles if you were to drop something, or knock into something. The TV programme on Childrens BBC, the “Chuckle Brothers”, always had Tom laughing.

Tom’s sister, Emily, or “Wee” as Tom called her, is over three years younger than him. The two of them made a great pair. They loved one another’s company. They shared a room at home. They played and laughed together. They even cooked together. They were great dancing partners too, matched both in height and in standard of movement.

Tom loved school, and the school loved Tom. Other children would squabble over who was to sit next to him in class. The smallest boy in the school, with the biggest giggle, made a big impact. The teachers and staff at Woolgrove (special needs) School in Letchworth were everything you hope for. The school has created a new prize that will be given out as part of the school’s annual prize giving. It is entitled “the Tom Barr award for the happiest child in the school”.

Tom died just before 1 o’clock on the morning of Wednesday the 7th July 2004, in the Cardiac Intensive Care Unit of Great Ormond Street Hospital. Outside GOSH is a statue of Peter Pan, (one of Tom’s favourites). Peter Pan, the boy who never grew up; just like our Tom. Tom was and is a part of our family: And a part of significance and scale out of all proportion to his size. We are so proud of Tom.

Richard, Evelyn, Jamie and Emily Barr
Article first published in the Down’s Syndrome Association Journal, Winter 2005