Stephanie Whitelock, 46, from Surrey, has been forced to abandon her 12-year career in student services to provide 70 hours of unpaid care each week for her son Gabe, who was left with severe disabilities after contracting congenital cytomegalovirus (CMV) in the womb.
Common virus, devastating impact
Gabe, now 10, was born in November 2015 to Stephanie and her husband James, 49, an IT consultant. Despite Stephanie taking all recommended precautions during pregnancy, including avoiding pate and soft cheese, Gabe contracted CMV—a common virus that often shows no or minimal symptoms in the mother. The virus is transmitted through kissing, sharing utensils, or playing with toys, and can cause serious developmental issues.
Around his first birthday, doctors confirmed the diagnosis. It is believed that approximately 20 weeks into the pregnancy, Gabe's brain stopped developing entirely. Today, he lives with cerebral palsy, autism, and a learning disability, relies on a wheelchair, and requires round-the-clock assistance with mobility, communication, and daily tasks.
Financial and emotional toll
Stephanie initially went part-time after Gabe's birth but eventually had to resign completely as appointments, therapies, and caring responsibilities became overwhelming. She now receives £750 monthly in carers' allowance, but this is insufficient to cover rising costs for mobility equipment, healthcare, specialist apparatus, sensory toys, and even clothing—Gabe needs two pairs of shoes due to his leg splint.
"Finances contribute hugely to my anxiety and well-being—and the fact it will always be this way," Stephanie said. "We've had to use credit cards and take out a loan to help cover costs. I live with the awful thought of what happens when we can no longer care for him in the future."
Unpaid care crisis
According to Understanding Society, 8.9 million adults across the UK provide unpaid care. Stephanie estimates she dedicates roughly 70 hours each week to caring duties. She has only recently secured a part-time role as a lunchtime co-ordinator at a nursery, working during Gabe's school hours.
"Caring means I'm not bringing in any income," she explained. "The biggest financial sacrifice we've made has been my career." The family of five, which also includes Ned, 13, and Primrose, four, faces significant emotional strain. Stephanie often feels isolated and torn between meeting the needs of all her children.
Physical and mental exhaustion
Stephanie describes the physical toll of caring: "Some nights, if he wakes and can't get back to sleep, we are up to give him nightly medication. The exhaustion is on another level because you're physically tired, but also tired from the mental load of appointments, therapy, and medication."
The family struggles to find respite care. "It has to be the right place or person. At the moment, we haven't been able to find anyone we feel would be suitable to care for him," Stephanie said.
Support and advocacy
The family receives support from Purpl, a money-saving platform that provides discounts on essential products for people with disabilities. Georgina Colman, founder of Purpl, noted: "One of the biggest challenges facing unpaid carers is that many don't even realise they are carers. They see themselves as a daughter helping a parent, a husband supporting a wife, or a friend stepping in where needed."
Stephanie urges a change in how care is valued: "It is a massive task to care for someone, but also a privilege, so it should be valued far more. With the paid care sector in disarray, unpaid carers are picking up the slack. But we are reaching a crisis point where we need to look after unpaid carers before they burn out."
Despite the challenges, Stephanie remains devoted: "He is a wonderful, smiley and giggly boy who brings so much joy to our lives. We will do anything and everything to give him the best life possible."
