To be able to go back to a private room, with a comfy bed to sleep or even just have a cry was amazing

For two and a half years we knew there was something wrong with our son Timmy. Timmy, who has epilepsy and is also non-verbal, started to have increased seizures, terrible agitation, which made us think he might have been pain alongside retching and vomiting.

He was put on medication to stop the retching and vomiting he was suffering from, despite this he began eye rolling – which turns out to be an expression of pain – and the medication didn’t seem to work properly.

Timmy was due at the gastro-clinic at Sheffield’s Children’s Hospital for a check-up so doctors could figure out why his condition was worsening. He was taken for various investigations and the next thing we knew was that Timmy was being taken off the medicine he’d relied on for the last two years while we waited to hear what was next.

Without medication, Timmy’s condition significantly deteriorated. The days seemed long as we waited for news, any news about what was going to happen next. Then one day, we bumped into the consultant that had originally seen Timmy, Mr Marvel (as we liked to call him!) who, when we told him about what was happening, he explained that Timmy would need an operation.

Despite what we thought our son had been living with for over two years, Timmy had been coping with a much more serious condition. He had Superior Mesenteric Artery (SMA) syndrome, which is very rare with only 500 recorded cases in the world. Over the past two-and-a-half years, part of Timmy’s small intestine had become compressed and trapped between two arteries – the aorta and super mesenteric artery – which had been causing his pain, loss of appetite and vomiting.

Mr Marvin is just one out of a handful of doctors who could operate on Timmy – an operation that is required in just 30% of cases – he just so happened to be in the right place at the right time for us.

It was incredibly hard for us to see Timmy slowly, but surely deteriorate before his operation. My partner, Alison, and I took it in turns to stay in Sheffield to be by his side and go back at home to Layton to be with our daughter, Chelsea. It was really tough.

This was helped though when we were told by other parents on the ward about Treetop House. Treetop House, a ‘Home from Home’ run by The Sick Children’s Trust, is located at the top of Sheffield Children’s Hospital, a lift ride away from where Timmy was.

It was a life-saver. It helped enormously with the strains and pressures of being in the hospital. The first night I stayed, as soon as I put my head down on the pillow I was asleep. Being in a small confined room with Timmy, sleeping on a camp bed was exhausting. To be able to go back to a private room, with a comfy bed to sleep or even just have a cry was amazing and really made me appreciate what the charity does for families.

Although our daughter mainly stayed back home, she did come over every now and then and we could all stay together as a family.

Seeing his sister helped Timmy’s progress dramatically. They have the closet brother- sister relationship and absolutely love each other to bits, so being able to bring them together thanks to the accommodation provided by The Sick Children’s Trust was wonderful.

What’s more is that Chelsea, who herself has spent a fair amount of time in hospital, could break away from the hospital when it got too much and could escape to the house.

We were at Sheffield Children’s Hospital for five weeks in total and stayed at Treetop for four of those weeks. We are so grateful to the staff at Sheffield Children’s Hospital and The Sick Children’s Trust for what they’ve done for our family.

We’ve been home for around a month now and things are going well since we got back. Timmy is enjoying all the things he couldn’t when he was ill and to see that, is an absolute pleasure. Thank you to everyone who made it possible.

Barbara Pettitt, Mum to Timmy