NC TLC Trust is a Northampton based children’s cancer charity dedicated to supporting families living with tumours, Leukaemia and other cancers. We provide practical and emotional support from the point of diagnosis.
The charity was set up by families undergoing treatment in Northamptonshire and surrounding areas and is unique in that is run by likeminded people supporting each other and forming new friendships along the way.
The trust was set up by Janet Walker-Smith in 2008 after her son TJ was diagnosed with (ALL) Leukaemia. The charity was formed following a lack of aftercare support to help them through their journey of treatment; now the charity supports families both regionally and nationally.
Today the charity and its board of Trustees ensure that the charity meets all the compliancy requirements set out by Charities Commission, which include policies and procedures to govern its operation and meet charity law.
“Finding out your child has leukaemia has to be among the worst news a parent can hear, for us it was a terrible shock and that day our lives changed forever. TJ was 17 months old and due to having his MMR vaccination in May 2005, but I noticed he didn’t seem very well and refused the inoculation. They did a blood test on him and by 4 pm that evening, he was admitted to hospital and they started treatment. He had a blood transfusion that evening.
TJ’s consultant Dr Shahid Ali asked if we had noticed TJ being sleepy and a change in his skin colour? He told us that TJ was very poorly and he had leukaemia. I burst out crying and KC (TJ’s older brother) ran down the corridor screaming, ‘No! No! No!’
TJ began a process of painful treatment that went on for more than three years. He had a cocktail of drugs and steroids on a daily basis, some of them you had to wear gloves to give him. There were various toxic substances and steroids. He ballooned and was bloated from all the drugs going through his system, and he was still a baby! One drug would make him constipated and another would make him sore to the point of bleeding. Every time he went to the toilet, he screamed. It was so hard to see our baby going through that.
TJ is now in remission. We are hopeful that we have seen the last of his leukaemia and we take each day as it comes.
Unfortunately, it is not just the leukaemia we have had to contend with. TJ has a lot of learning difficulties as he has had a lot of time off from school. He also has low muscle tone as he has spent so much time in the hospital. A year after he finished his treatment, he started having epileptic seizures. We thought that we had moved on, but then there was something else to contend with. Our two wonderful boys have been so brave through it all; TJ is such a character and keeps on smiling when everybody else is down. KC has been an amazing brother to TJ and has put his brother’s needs first without complaining.
We know how hard it is keeping a family together when one child is suffering from a potentially life-threatening illness. You need to be a family as well, for the sake of the siblings. It’s really difficult, especially when you are going through the treatment. We never knew when we would end up in the hospital; we always had a bag packed ready to go. You forget how to be a couple and you end up tired and wrapped up in all the emotion, but you keep on going, with the help and support of those closest to you.”