50 years on from thalidomide: How Yorkshire charity is helping families with disabled and ill children across the country

“We have to keep Isaac’s life very regulated because any change can send him into an impulsive rage,” Amanda explains. “The house cannot be too cold, or too hot; he will only eat certain food; we have had to buy special chairs for him to sit at the table for a meal.”

Amanda and her family are among thousands who have been supported by York-based Family Fund over the past five decades. The charity, which marks its 50th birthday on April 2, provides grants to families across the country who are raising a disabled or seriously-ill child, on a low income.

The organisation has supported Amanda and her family with grants for a washing machine, outdoor play equipment and sensory toys for Isaac, as well as funding getaway breaks. “When you live with a child with diverse needs like Isaac, nothing is normal anymore, there is no let up and everything costs more,” Amanda says. “I struggle to pay bills and have had to borrow money from family to make ends meet…

“The breaks have been a godsend because the grant also covers the cost of me taking someone with me to help out. This means they can look after Isaac some of the time while I have some quality time with my daughter. It also means there is space for Isaac to run around freely...That freedom is so important.”

Family Fund began life in 1973 after a public campaign on behalf of children affected by thalidomide. Formed as part of a £3m fund provided by the government to support families impacted by the drug, it awarded its first grant of £26 on April 2 of that year, for a father to travel from Wales to visit his sick daughter in hospital. Fifty years, and more than 1.5 million grants later, it is still providing vital support to families. “The need for financial grant support is as much needed now as it was then,” says Cheryl Ward, Family Fund’s chief executive.

In fact, the charity finds itself in greater demand today than ever before. With high costs of living remain, its grants for essential items such as beds, clothing, and washing machines, and for much-needed family breaks, are a lifeline for many people struggling to make ends meet.

“When there’s a cost of living crisis or pressures, that’s even greater for those families living on a low income with a disabled child or young person,” Cheryl explains. Last year alone, Family Fund delivered 170,919 grants and services, worth over £37m, and received a 135 per cent increase in grant applications compared to before the pandemic. Research by the charity highlights that intense caring responsibilities and the up to three-times higher costs of looking after a disabled child compared to a non-disabled child is leaving families facing sky-high prices on top of severely reduced incomes.

Cheryl says: “We are proud of the way we have supported families and continue, as we have for 50 years, to be led by what parents and carers themselves tell us they need to make a difference to family life...However, we are needed now more than ever, and continue to see the highest numbers of families coming to us for help in our history. Families are overwhelmed by living costs and facing staggering financial pressures which are now affecting their children’s quality of life.”

Nine-year-old Sienna and her mum Caroline, who live in York, are among those supported by the charity. Sienna is autistic and has sensory difficulties and the family have been helped by grants to fund getaway breaks and a bed and mattress for Sienna. “As a single parent, it’s difficult to afford holidays,” Caroline says. “So we use the grants to go to Butlins in Skegness during the summer holidays. It gives Sienna somewhere she can go and feel safe, as she knows the layout of the park, the people, and the journey there. If she’s going somewhere new, she often gets anxiety.”

Alongside giving grants, Family Fund also offers wider support, including information and resources on where to go for help with money and benefits; budget planning; children's education; mental health and wellbeing; digital training and creative workshops.

With demand high, those behind the charity want to help even more families – and they’re calling on people to support them to do so as part of Family Fund’s 50th anniversary milestone. The charity is encouraging people to hold a Big Birthday Brunch this April, coming together with friends and family in support of its work. It is also appealing for people to join its Big 50 Challenge, walking or cycling 50 miles, swimming 50 lengths, holding a 50-question quiz night or taking part in a 50-inspired task of their own.

“If we can raise more income and generate more funding, we can help more families and that’s really important to us,” Cheryl says.

“There are more and more families coming to us for help and we’re calling upon all of our funders to really help us to help them in our 50th year…

“Our support is still needed, it’s more important than ever and we want to be there for even more families.”

Visit www.familyfund.org.uk