Co Down parents who lost son to leukaemia call for financial support for families with child cancer diagnosis

David and Sara Watson from Banbridge have worked tirelessly to raise hundreds of thousands of pounds for children’s cancer charities since their son Adam died in August 2022.

The couple, who established the B Positive charity, recently took their campaign for a change to the benefits system for families with a child with a diagnosis of cancer to Westminster.

David said: "When your child is diagnosed with cancer, money is not the be-all and end-all by any means, but you still need money to function, to keep a roof over your head, and you need money for when you bring your child home from hospital so that the home is warm and comfortable for them and not an ice box because you can’t afford oil.”

He added: “One of our aims as a charity is to change a couple of aspects of legislation in terms of the payments that families get off the back of a child’s cancer diagnosis. As it stands at the moment you have to be diagnosed three months before you can even apply for DLA ( Disability Living Allowance for children). We want to try and change that so that payment becomes instantaneous (on diagnosis). We would also like a payment, particularly for families in our scenario, who have lost a child.”

David, who works as a van driver and Sara, who is in admin, said their DLA payments stopped just days after their son died.

“Adam died on August 3 and myself and Sara had to go back to work in October because we had to keep a roof over our heads."

Upper Bann MP Carla Lockhart, who welcomed David and Sara to Westminster for a series of engagements with the government, opposition parliamentarians and other charities, said: “Little Adam inspired so many of us to get behind the B Positive campaign. His warrior attitude in his battle against cancer was truly awesome, and if we can carry just a little bit of his legacy through by securing ‘Adam’s Amendments’ to alter the benefit system, then we would have a lasting and positive reminder of Adam for every family facing these difficult pathways.”

She added: “We had very positive engagement with Maria Caulfield MP, Parliamentary Under Secretary in the Department for Health, and with Andrew Qwynne MP who is Shadow Minister for Public Health. We also met with the Secretary of State for Northern Ireland, Chris Heaton-Harris MP, and the Shadow Secretary of State Peter Kyle MP. These meetings will hopefully kick start the process in Westminster whereby we can secure legislative changes to the benefit system to help families.

"I want to commend David and Sara for their tireless campaigning on this issue. I will certainly continue to do all I can to support them in making these transformative changes to our benefit system, and look forward to ongoing engagement at Westminster to make further progress.”

David added: "They were all very positive and everybody agreed that there was merit in what we are hoping to achieve, so it’s now just a case of keeping the pressure on and seeing it through.”

An estimated 70-80 children in Northern Ireland are diagnosed with cancer every year. In many cases with the impact of the illness being so devastating on the child, the commitments of appointments and dealing with the symptoms of the illness, parents and/or guardians may find it almost impossible to work whilst also tending to a sick child.

David said: "When Adam was diagnosed, both myself and Sara were off work. We were fortunate in the sense that Adam’s our only child so we could devote 100 per cent of our time to him, but there are parents who have other kids which means a parent is generally in the hospital with a sick child and the other parent is at home with maybe one, two or three other kids. There is real pressure on trying to work and keep a household going. Just because your child is diagnosed with cancer doesn’t mean all your bills stop. Our employers were brilliant, but there’s people who are self-employed and people on zero hours contracts – the minute they stop working, they stop getting paid.”

For many years David had been involved in significant fundraising work for a range of charitable causes with his lodge – Banbridge Bible and Crown LOL 423.

However, when Adam was diagnosed with leukaemia, David and his wife Sara created a network of fundraisers known as Adam’s Army to raise money for the children’s cancer charities who helped the schoolboy. To date they have raised in the region of £100,000.

David said the charity work is a “positive distraction” for him and Sara.

“One of our big aims for the charity is to supply every child who is diagnosed with cancer in Northern Ireland with a large suitcase. There’s going to be a special baseball cap in it. They’ll have toiletries for the parents and child. Adam had a blue fleecy blanket and it went everywhere with him and we are getting one of those recreated with the B Positive logo on it. We are hopefully getting the suitcases soon.

"Nothing we do now is going to improve things for me and Sara and it’s not going to help Adam, but Adam always wanted to help other people so we are trying to carry on his legacy.”