Stephanie Whitelock, a 46-year-old mother from Reigate, Surrey, provides more than 70 hours of unpaid care each week for her 10-year-old son Gabe, who lives with cerebral palsy, autism, and a learning disability. The family fell £15,000 into debt, and with the additional cost of disability set to rise by 12% by 2030, adding up to £15,000 a year in extra costs according to money-saving platform Purpl, families like Stephanie's face mounting financial pressure.
CMV infection led to brain damage
Gabe contracted Cytomegalovirus (CMV), a usually harmless virus, while still in the womb. The brain damage he sustained only became evident when the family realised he wasn't hitting developmental milestones. Stephanie had worked for 12 years in student services at a local sixth form college, but after Gabe's birth, she returned part-time. By the time he was two, constant care became necessary, and she left her job.
Stephanie told the Mirror: "I really loved my job, but I love my son more." She emphasised that "early intervention is key" for Gabe, requiring time off for appointments and therapies, which became unsustainable.
Financial toll and loss of income
Now Stephanie works a couple of paid hours of lunchtime cover at a nursery, allowing her to "step out of her caring role." However, the family was denied transport for Gabe, so she drives him to school and can only work between 10 am and 2 pm. Her salary dropped from a five-figure sum to just four figures. The family has cut back on holidays, limiting trips to park visits and swimming at the local leisure centre.
Additional expenses include higher household bills, specialist equipment, mobility aids, and healthcare-related costs. Gabe wears a leg splint, requiring the family to buy two pairs of shoes each time he gets a new one. Disability club costs for Gabe are £105 per day, compared to £25 for her daughter. While the NHS provides some incontinence products, these "are never enough," and the family buys extra items like gloves, wipes, and aprons.
Medical costs and private therapies
Private physiotherapy sessions cost more than £100 an hour. A trip to a US clinic, where Gabe learned to walk despite being told he never would, cost £10,000, which the family fundraised. Stephanie noted that while the NHS has provided great care, they have had to go private for certain therapies.
Emotional and physical demands
According to recent research by Carers UK, more than one-third (37 per cent) of unpaid carers report feeling overwhelmed due to insufficient support. Stephanie relates to this: "Don't get me wrong, my son is an absolute joy, and it is a privilege to care for people. But it is tiring, and it's a lot to mentally keep yourself resilient. We are overwhelmed."
Gabe requires dressing, changing, and personal care daily with "no let-up." Stephanie described changing him on a bed that can be moved up to protect her back, as doing it on the floor is now difficult because he is too big. She has reached breaking point during public incidents and when using dirty disabled toilets.
Social challenges and future fears
Socialising is challenging; at a football award ceremony, Stephanie had to feed Gabe and leave early when he became upset. She has help from her eldest son, a young carer, but remains "incredibly fearful of what the future holds" as they approach adult care. The transition will be "very, very difficult," and she has sleepless nights over how to provide for Gabe long-term.
Stephanie would like to see "caring mentors" to help with work, counselling, and practical matters like manual handling. She said: "It would be great to have a one-stop shop where you can go and visit and see someone and get that kind of advice." She also calls on the government to provide financial support and help with the mental load, suggesting a support service where carers can talk to people who understand their situation.
