NC TLC Trust was set up in July 2008 by the Smith’s family after their son TJ underwent a treatment for Leukaemia. Although the medical care was brilliant, they found that the aftercare support for the families was non-existent and they decided to start up a charity that would provide this emotional and practical support. There is their story:
“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 have 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 4pm 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) rand 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 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 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.”
Can’t find a charity you are looking for?
Suggest a charity to us and we'll add them to this website.