All for the love of Katie

• Ann McKerracher in Katie's room with Beano, one of the family's three dogs. Picture: Phil Wilkinson

It is the typical bedroom of an 11-year-old girl, except that there is one thing missing: Katie.

Katie McKerracher died one year ago today. She had a diffuse pontine glioma, a rare and inoperable tumour located on the brain stem. A few hours after she passed away, she was brought back from hospital to the family farmhouse in the village of Ettrickbridge near the Borders town of Selkirk, so her parents and two older brothers could say a proper goodbye to the little girl they loved so much. "It was almost like we wanted to put her to bed," says her mum, Ann. "We wanted her home."

For Ann, 41, and her 42-year-old husband Andrew, it seemed inconceivable that their happy, outgoing and friendly daughter was no longer with them. A year on, they are still coming to terms with their loss, and hoping to help other families who have been affected by diffuse pontine glioma with their charity, the Katie McKerracher Trust.

Sitting downstairs in front of an open fire, surrounded by the three family dogs Beano, Dylan and Homer, Ann talks about the Katie she knew. On the walls and the mantelpiece are pictures of Katie – sitting confidently astride a pony, smiling with her brothers Fergus and Bruce, grinning for the camera – a normal schoolgirl.

"She absolutely loved her highland dancing," she says. "She had been going to a dance school in Hawick since she was five and she was a very, very good dancer, one of the best in the school. She did exams and appeared in the show. She would spend hours in front of her mirror at home practising the dance moves she'd been shown so she could get it right. She also had a pony called Bennie who she rode. But most of all she loved being a very sociable kind of girl. She just loved being with her friends."

The first sign there was anything wrong came one night in January 2008 when, aged ten, Katie came out of the shower and fell, and bumping her head on the radiator and complaining that she felt dizzy. Then a couple of weeks later the family went ice skating.

"She'd been once before and she'd had no fear at all, she could just get out there and do it," says Ann. "But when we took her again she didn't want to let go of me or leave the side."

Not long afterwards, Katie started being sick in the mornings. Her balance was off, and when she walked, she would have to put her hand on the wall to steady herself. "We knew something just wasn't right," says Ann.

After various GP visits and a call to NHS 24, it became clear that she wasn't getting any better. Finally she was given an appointment at Borders hospital, where they decided to do an MRI scan.

"On one hand we were getting into a panic, and then on the other saying 'oh for goodness sake, it's not like they're going to say anything terrible'. So they did the scan and took us into a private room, and told us they could see something abnormal in her brain stem and it looked like it could be a tumour. I just thought, 'that sounds critical. They're not even saying it's at the side of her head'. It sounded awful."

Ann takes a breath. "And then I had to go in and tell Katie she had a brain tumour. And Katie's sitting there and, because they'd had to inject her with iodine, she's saying 'I just want rid of this needle in my arm'. All she could think about was getting this needle out."

The following day Katie was taken to Edinburgh's Sick Kids hospital by ambulance. It was there that Katie's consultant, Hamish Wallace, told Ann and Andrew that their daughter had only "six to nine months, maybe a year" left.

"I remember thinking 'this is just surreal'. Katie's walking along to the ward in her trendy wee jacket and her jeans and her boots, and she just didn't look like anything that was ahead of her was about to happen."

Diffuse pontine glioma is a malignant brain tumour for which the average survival rate is about a year. Because of its position on the brain stem it cannot be removed, and there is no cure. The only treatment is radiotherapy and chemotherapy, which can help improve symptoms in the short term, although in the long term the tumour often grows again. It is classed as the worst type of paediatric cancer.

"All the way through we thought 'no, we're going to do something about this, Katie's going to get better," Ann says. "But that's not what happened to us either."

Katie was put on to a six-week course of radiotherapy almost immediately. Five days a week either Ann, who had left her job working in a local caf, or Andrew, who also took time off from his work for a pharmaceutical company to care for Katie, would drive her the three-hour round trip to the Sick Kids hospital for her radiotherapy, and seven days a week she also took a chemotherapy tablet and steroids. But instead of starting to feel better, she rapidly went downhill.

"She was just suddenly not Katie," says Ann. "She was usually the body of the kirk, in amongst everything and involved in everything, but within days she was wanting me to get a wheelchair because she felt she couldn't walk. She would occasionally go into school for a short time, but she could hardly put one foot in front of the other."

The whole family, including Katie, tried to stay positive. The only time Ann says she remembers seeing her daughter get upset about her illness was when she went to visit her friends at the dance school. By this time she was permanently in a wheelchair and her movements were significantly impaired. She had finished her treatment and the chemotherapy had devastated her white blood cell count, making her weak.

"Everyone at the dance school was bursting to see Katie and tell her that they had been doing a High School Musical dance class, which was just the sort of thing she would have loved," says Ann. "Afterwards I helped her into the car and she just burst into floods of tears. She was just so upset because she couldn't go dancing any more. She had been this normal child and suddenly she wasn't. That was one of those moments where the two of us just cried all the way home."

Not long afterwards Katie stopped being able to speak. She was barely able to move, and the doctors at the hospital in Edinburgh couldn't do anything more for her. In less than six months she had gone from happy and healthy to terminally ill and unable to do anything for herself. It was at this point the McKerrachers contacted a healer. "We couldn't just do nothing," says Ann.

Over the next few months Katie rallied a little. She gained a bit more mobility, was briefly able to speak again, and even to go to the local pub for steak pie and chips. But by the time she turned 11 in late September, her health was on the decline again.

The last time Ann remembers Katie communicating with her was on Christmas morning. "Andrew and I were sitting with her, feeling so grateful that she was here, and she was OK, and I got upset. And she just raised her eyes at me as if she was saying 'stupid old mum's getting upset'. She hadn't been communicating for quite a while and she made such an effort to do that."

Katie died in her parents' arms just over a month later. She had developed breathing problems and been rushed to hospital. The family were devastated. On the day of Katie's funeral, there was a blizzard, and snow fell as a pony and trap festooned with winter flowers carried Katie through the village. The church was so packed that people stood outside during the service. Afterwards, the McKerrachers discovered that more than 3,500 had been given at the collection. They knew what they wanted to do with the money.

"We'd decided by that point that we wanted to set up a charity to help other people who were in the same position as us. It is one of the most horrific things to go through, and it's isolating. And just to be able to give someone a bit of help, that's what we want to do. To give a bit of help on the practical side of things."

They will focus on putting together a booklet for parents that gives information about diffuse pontine glioma – there is so little available that when Katie was diagnosed the McKerrachers were given a booklet about leukaemia – and giving advice on things like how to rent an electric wheelchair – something the McKerrachers found difficult because most companies won't rent one to a child with a terminal illness. They also hope to be able to pay for small holidays for families before their children start treatment.

So far, the family have been overwhelmed by support for the trust. A bike ride round Uist – "the sort Katie would have loved", Ann says – has been organised for July and 120 people have pitched in to come along for the weekend. And Anta, the Edinburgh and Tain fabric company, has produced a Katie McKerracher silk scarf and plans to introduce a whole range of Katie McKerracher products, with 5 per cent of the profits going to the charity.

"We've always tried to stay positive, even after all that's happened," says Ann. "Much as we would dearly love for everything to be different we can't change it, so we've all just got to be there for each other. And if we can do anything for anybody else, that's what Katie would have wanted. We've always been so proud of her. She was such a special little girl."

Find out more at www.katiemckerrachertrust.co.uk. You can donate at www.justgiving.com/katiemckerrachertrust

INOPERABLE

WHAT IS DIFFUSE PONTINE GLIOMA?

A DIFFUSE pontine glioma is a tumour in the brain stem.

It is classed as the worst type of paediatric cancer.

Because of its location in such a critical part of the brain, the tumour is inoperable.

Diffuse pontine glioma tumours are malignant and grow rapidly. Symptoms include muscle weakness on one side of the body, swallowing problems, speech problems, crossed eyes, drowsiness, and personality changes.

Treatment usually includes radiotherapy and chemotherapy.

Most children with diffuse pontine glioma die within a year of diagnosis, and the average age of patients is five to ten years old.

About 35 children in the UK are diagnosed each year with diffuse pontine gliomas, with about five of those resident in Scotland.