'We were scared the worst would happen' - Yorkshire Children's Trust founder shares his family story in charity Trustees' Week

He contacted various companies that sold wheelchairs and asked if there was any possibility of a discounted price. “I managed to get one donated just for the cost of delivery which was fantastic for us but it was a lightbulb moment for me…Surely other families are suffering in the same way.”

Back at the hospital, Simon spoke to other families on the ward and found a common theme with people struggling to access the equipment and modifications they needed outside of hospital. The seed was planted for what, in 2011, would be established as the Yorkshire Children’s Trust. Initially the charity, which is based in Halifax, was focused on helping families with equipment needs.

But in the past 12 years, it has expanded and adapted and now helps children and their families across Yorkshire and beyond to cope with the emotional and financial strain of many life-changing illnesses, in various ways. From inception it was decided that the trust would not just be a cancer charity and would provide help to families who fall through gaps of support among the NHS, local authorities and other charitable organisations.

One-off grants help parents and carers cover the costs associated with having a child in hospital for an extended period of time. The charity also offers family breaks at its respite holiday homes in Skegness and runs counselling and play therapy services to support children with their mental health. Demand for that aspect, Simon says, has increased dramatically since the Covid-19 pandemic.

As well as being founder of the charity, Bradford-born Simon is one of its trustees. He spends time across the region talking to schools, businesses and organisations about the charity and its work and meets with other trustees to consider applications for Yorkshire Children’s Trust’s support. “I’ve got the unique outlook of having gone through this ourselves,” he says. “We know what other families are going through.”

Simon is speaking as part of the Charity Commission’s Trustees Week campaign, running from November 6 to 10. The campaign looks to celebrate the almost one million trustees across the UK. “We know it has, and continues to be, a challenging time for charities and so this Trustees Week, I want to commend their work and highlight the wealth of support and guidance available,” says Dr Helen Stephenson, chief executive of the commission, which regulates charities.

"I encourage trustees to use this time to recharge and consider engaging with the fantastic network they are a part of, taking part in events and discussions online to share their experiences and grow their knowledge. Many charities are on the look out for more volunteers and even the strongest trustee boards benefit from a diverse range of skills and experiences. If you’re able and not already doing so, why not consider becoming a trustee?”

“It’s not as daunting as you think,” Simon says. “It’s great for meeting new people and learning about how you can support a charity’s aims and the Charity Commission helps you along the way.”

Simon gave up his former career in hotel and pub management when Leigh-Anne became unwell. He is able to support the charity whilst being a full-time carer to his daughter, now aged 22. Leigh-Anne had been a poorly child, suffering infection after infection and at Christmas in 2006, became very unwell. After a spell at Scarborough Hospital – the family were living in Bridlington at the time, she was transferred to St James’ and after various tests, the Widdops were given the news that she had Acute Lymphoblastic Leukaemia.

Cancer cells had been found in Leigh-Anne’s spinal cord and a treatment plan for cranial radiotherapy and three years of chemotherapy was put into place. But Leigh-Anne badly reacted to a chemotherapy drug, leaving her with dangerously high blood pressure and a bleed on her brain.

She spent time in intensive care in an induced coma and it was decided that the best course of action would then be a bone marrow transplant. Leigh-Anne’s parents and brother were not a close enough match but she was able to receive stem cells harvested from donor umbilical cord blood.

“You’re hit by financial strain and emotional strain at the same time,” says Simon, reflecting back on that period. “Every time we had to leave the hospital, it was so hard not knowing what we were going to come back to, especially when there was all these setbacks. We were so scared to leave in case the worst happened. On more than one occasion, we were told to get the family together and say goodbye…She’s a little fighter she is. Each time she had obstacles put in front of her, she defied the odds.”

He adds: “Leigh-Anne has been left with epilepsy and learning difficulties and will have other long term complications for the rest of her life, but we are thankful to the consultants, doctors and nurses for taking such good care of her.”

- For more on the charity, visit yctrust.uk