Thomas ‘Toti’ Worboys sadly passed away in July 2014. Since then, his family have been tirelessly raising funds for CCLG in Toti’s memory, to support research into childhood leukaemia. Here, Toti’s Dad Nick shares his story...
All children are special, however, right from his birth Toti was extra special. He arrived into the world a lot faster than his elder brother. So quick, that Amelia was caught off guard and didn't have time to get to the hospital; so we delivered him on our own at home.
He was an angelic, cute, healthy and happy little boy.
At the age of two when he broke his leg, we didn't suspect that there was anything wrong with his bones. However as he grew up, he started to fracture more bones. Eventually he was diagnosed as having a rare genetic disease called Olliers, which causes cartilage lumps and weaknesses within his bones. It was NOT a life threatening condition and leukaemia was never on the radar. However, he was supposed to look after his weaker bones. Easier said than done, as boys will be boys, so accidents did happen. He was always so brave with the many procedures and operations to fix his bones and remove the benign lumps.
Olliers stopped him from contact sports and games but other than that he led a very normal life. Toti was mad keen on sport, desperate for success. He never took no for an answer. He was determined to play tag rugby, cricket, hockey and athletics.
Watching rugby was our greatest pleasure. Our most special times have been supporting the mighty Bath Rugby. In April 2014 his brother was away, so Toti and I went to see the match on our own.
I have one of my fondest memories of him from this match. He decided he wanted to sit on my lap and we talked about the programme, the players, the game and tactics. Best of all we cuddled for the whole of the match.
At the time I knew it was one of those special moments that will stay with me forever.
Toti was good company, he would love to chat for hours on end and he was interesting and a good listener. He was naturally empathetic, soft, gentle and kind hearted. He was a good boy who was never in trouble.
Toti was blessed with a most infectious sense of humour. He could make us all laugh even at the most inappropriate moments. Trying to discipline our children required impossible levels of self control, as soon as I put on my serious voice, he would automatically burst out into uncontrollable laughter. Resistance was futile so we'd all be crying with laughter. He was full of joy; delivered with a beautiful smile.
All good things come to an end. Early in July 2014 Toti had a minor operation on his leg. Ironically we were completely relaxed about the operation, as this was the last one on the list and we could look forward to a period of normal family life. Toti came home and was slow to recover. Late afternoon on July 14th he took a turn for the worse. The paramedics took him to hospital with what we thought was a minor infection. Events escalated quickly.
We had no idea that he had acute leukaemia which triggered a terrible bleed in his brain.
It all happened so quickly. While he was still with us we told him how much we loved him and that we couldn't be any more proud of him. Amelia and I brought him into this world on our own, and so to complete the circle just the two of us laid with him as he drifted off to sleep in the early hours of July 15th. So it is with the greatest sadness that Toti has moved on to a higher place.
We remain positive and motivated to keep his memory alive. It's a comforting thought that Toti can make a difference even after death.
Childhood leukaemia is one of the biggest causes of death in UK children. Clearly helping to cure childhood leukaemia is a massive goal. Consequently we have set up a memorial fund to raise money for CCLG. We've chosen them as they will ringfence the memorial fund and we can direct the money towards childhood leukaemia research. We aimed to raise over £100,000 and have now reached over £250,000.
We are deeply moved by the amazing reaction and continuing support to the memorial fund. Thank you everyone.
The Worboys Family
Make a donation to The Toti Worboys Fund
Open an online fundraising page for The Toti Worboys Fund
Set up a regular Direct Debit donation to The Toti Worboys Fund
News
Toti's dad runs London Marathon
75 Team Toti runners tackle the Bath Half Marathon
Join Team Toti in the Bath Half Marathon
John O'Groats to Land’s End raises over £8,000
Village fun run supports Toti's fund
'Team Toti' raise an incredible £30,000
Team Toti's Bath Half Marathon
Toti's legacy raises an incredible £300,000!
Research projects funded
Investigating novel drug combinations for acute myeloid leukaemia
Can we prevent leukaemia in children?
Improving the outlook for children with Philadelphia positive ALL
Studying the genetics of leukaemia to find new treatments
Identifying a new type of blood cancer to improve the outlook for patients with acute lymphoblastic leukaemia
What factors affect the survival of children and young people with high-risk acute lymphoblastic leukaemia.
Understanding why some childhood blood cancers are incurable.
Developing ways to identify chemotherapy resistant B-cell acute lymphoblastic leukaemia cells
BRAIN - A study to find out why some patients with leukaemia have long-term problems with learning and memory
Fundraising pages
Text CCLGTOTI to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Toti Worboys Fund so that your donation is allocated to the correct fund.
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