‘A refuge. A respite. A lifeline’: Mother hails CHAS children’s charity crucial support

Grace Dennison White and two-year-old daughter Evelyn have fun at Rachel House in Kinross, a CHAS hospice

The countdown to Christmas is always a busy time but, amid the hectic rush, we learn to treasure the little moments that mean so much.

Grace Dennison White is determined to share those moments with daughter Evelyn and has found the perfect place, spending last week at Rachel House, a hospice run by Children’s Hospices Across Scotland (CHAS).

Complications during Evelyn’s birth meant the two-year-old suffered from a lack of oxygen and blood flow to the brain that left her with cerebral palsy and severe epilepsy. She now needs to be tube-fed and is visually and hearing impaired.

Dennison White said: “The prognosis is very typical…you wait and see. We know things will deteriorate over time, but there are lots of interventions that can be put in place to help her.”

Dennison White is Evelyn’s full-time carer while husband Thomas works full-time as a logistics co-ordinator for an outdoor adventure company. The couple, who live in Newtonmore, have been supported by CHAS for more than a year. Dennison White said: “We moved to a place we didn’t know anyone and far from our family, with very little support. But CHAS has proved a lifeline for us. They supported us initially with at-home carers and a stay at Rachel House.

“We came in the summer for two months and it was great. It’s like a respite, somewhere to come and stay away from all the jobs and appointments and work and therapies, and an opportunity to spend time together, but also to slow down and take a step back.”

In many ways Evelyn is a typical toddler, according to Dennison White, but her health problems bring many additional challenges. Dennison White said: “Evelyn is very aware of her surroundings. She wants all the attention. She loves people and arts and crafts. She’s a little madam – and a little cutie too – but we have to cope with a lot of seizures, breathing problems and difficulty communicating. It has been mentally exhausting…the endless new diagnoses and problem-solving, the chasing of healthcare professionals and medications, as well as researching and applying for charity funding. On top of that we don’t get much sleep.”

Dennison White has spoken of her daughter’s struggle and the support she receives from CHAS as the charity begins its festive fundraising appeal amid the cost of living crisis.

Families supported by CHAS have to contend with being forced out of work to care for their children and struggle to pay for fuel to attend various medical appointments and live in fear of blackouts as energy bills soar.

Monica Currie, CHAS’s family income maximisation officer, said: “This year many families are focused on how to pay their bills. For many, Christmas memory-making will have to wait until next year.

“Working families who are not in receipt of benefits are worried about the cost of living crisis and the challenges they face to reduce their energy bills. Humidifiers, suction machines, ventilators, oxygen concentrators all use up a tremendous amount of electricity and it’s not something that can be rationed. Families have also mentioned the risk of blackouts, power cuts and the threat of their energy being cut off if they can’t pay their bills.

“We are calling on anyone in a position to donate to do so to help us fulfil our aim of supporting all children and families across Scotland who need our help.

Rami Okasha, CHAS chief executive, added: “This year, our focus has remained on providing as much care as possible through our two hospices, our home-care services, by working in hospitals across Scotland and continuing to deliver care remotely through our virtual hospice service. Our incredible staff and volunteers have made this possible by working with our colleagues in the NHS and local authorities and our dedicated supporters have continued to be a shining light.

“Without our dedicated supporters we just wouldn’t be here and we continue to be humbled by their generosity this year. This invaluable support has meant we’ve been able to keep our vital services going and support some of the most vulnerable families in the country.”

Donate to the appeal at chas.org.uk/donate