08/10/2026
“At the same time as trying to support our son through the hardest experience of his life, we still had to find a way to pay the bills and the mortgage. The financial pressure on parents and families in this situation is huge. Straight away I had to quit my job – I had no other option as I had to take him to hospital every single week and care for him 24/7.”
Terri’s son Jensen was diagnosed with aplastic anaemia last year when he was seven, and needed a stem cell transplant to survive. The impact on their lives was huge – but amongst the emotional and practical toll, the financial impact was significant.
“My partner had to keep working and it felt as though we were being forced to choose between having enough money to get by and being there for our child when he needed us most. When Jensen went into treatment, only one parent could stay, and we couldn’t afford a hotel or B&B – my partner was going to sleep in the car just so he could be close.”
“We applied for Disability Living Allowance before his transplant, but the money did not come through until afterwards, when we had already been through so much. We were waiting months, with only my partner’s money coming in. We were trying to keep a roof over our heads for when we went back home and feed ourselves in the meantime.”
Terri is not alone in this experience – sadly the financial impact of supporting your child through a stem cell transplant is huge, and there isn’t enough support out there. That’s why we’re proud to support Hugh’s Law, and the consultation to encourage employers to support parents of seriously ill children, at one of the most difficult times of their lives.
“Paid leave and additional support from employers for parents of seriously ill children would make a huge difference at what is already an incredibly difficult time, particularly if financial support is available from the moment of a child’s diagnosis and can be accessed through a simple, compassionate process that is not bureaucratic or burdensome for families.”
