The couple, who also had to look after Ross’s older sister, faced daily trips to the Sick Children’s Hospital in Edinburgh. Ms Lauder, 40, a part-time clinical data manager, said: “We were running up costs for things like petrol, parking at £10 a day, eating out. “I took ten months off work, and received sick pay for the first six months. We received a CLIC Sargent grant, which was a huge help.” The couple dipped into their savings but faced even more expense when they had to take Ross to the United States for two months of specialist treatment. “The NHS paid for the treatment, but we had to find air fares, two months’ worth of car hire which cost around £3,500, and meals. We were given accommodation for free by the Ronald McDonald House charity, with an evening meal included. “Our families did fund-raising for us, but the expenses cost us around £10,000.” Ms Lauder, who received help from a CLIC Sargent social worker to claim disability living allowance, said the government needed to do more to help families cope with the financial costs. “After your child has been in hospital for 85 days, your allowance is cut because the government says nurses are caring for your child. Do they really think that any parent would leave a young child alone when nurses are busy?”