Ruby’s courage inspires mother’s marathon challenge

Ruby Holding is much the same, bright little girl she always was.

The nine-year-old loves cycling with her dad, Steve, spend hours in the kitchen baking her favourite lemon drizzle cake and there’s a room in the family home which is packed with her various crafts. However, there is one difference. Following a brain tumour, diagnosed two years ago, Ruby lost her sight and now the entire Holding family are feeling their way to a new future.

Mum Julia says she instantly knew something was seriously wrong when Ruby, the youngest of her three children, began complaining of feeling unwell. Call it maternal instinct, but even as doctors told her successive test results had come back negative and assured her that Ruby was probably just suffering from a virus, Julia suspected differently.

“There were times when she seemed to get a little better, but then a few days later she’d slip back. When your child is in agony from, headaches when they’re vomiting and losing weight because they just can’t eat, then no one can reassure that there’s not something seriously wrong.”

It was 18 weeks before the worse was confirmed. Ruby had a brain tumour and by the time doctors could operate in June 2012 the risk of surgery was high.

“That whole period Ruby was in hospital feels like a bit of a blur,” says Julia, who along with her husband Steve runs the Pig and Pastry cafe in the Bishopthorpe Road area of York. “Obviously it was horrendous, but I think maybe your mind tries to stop you from remembering just how terrible it was. Any parent whose child has been seriously ill will know that feeling where you just go onto automatic pilot. I think we all thought that for Ruby’s sake we had to keep calm and in control.”

After the operation at Leeds General Infirmary, the family still faced an anxious wait as Ruby had to undergo months of further treatment and the rounds of chemotherapy which lasted until spring last year were much more gruelling than the surgery. However, through it all, the family tried to focus on the road ahead rather than what had gone before.

“There is nothing we can do to change what happened,” says Julia. “All we can do is deal with the situation the best way we can and make Ruby’s life the best it can possibly be.”

It has been an exhausting two years and while Ruby was mid treatment, Julia’s sister, who lives in America, dropped another bombshell when her 11-year-old son, Theo, was also diagnosed with a brain tumour.

“We felt sure it must be somehow related. The odds of it not being just seemed too high,” says Julia. “But it wasn’t, it was just one of those awful coincidences. Theo’s tumour was benign and he’s doing really well, but yes sometimes you do wonder if there’s anything else life can throw at you.”

While there has been plenty of tears shed, the Holdings have always been determined that Ruby’s blindness will not hold her back. With regular teaching support at home, she has recently returned to classes and her old friends at Scarcroft School. It was an important landmark in her recovery and was partly down to Ruby’s own determination to claim her old life back and also the rest of the family’s insistence that normal life wouldn’t be halted by the tumour.

In the kitchen of the family home, Ruby sits in her favourite chair carefully sewing a sock monkey. Occasionally she’ll ask for help from her big sister Hattie, 12, but for the most part she remains fiercely independent. When Julia tries to help by starting off a few stitches, they’re gently deemed not to be neat enough and have to be unpicked.

“That’s my daughter,” says Julia. “Ever the perfectionist. Ruby has never been the kind of child who sits still, she always wants to be doing something, perhaps even more so since the tumour. We’ve got an entire room dedicated to crafts and that’s been really important.”

Hattie is sent off to get the snakes and ladders board, which Ruby made with her dad. Plastic snakes and raised wooden ladders have been mounted onto a square board and the counters are pegs which fit snugly into holes. It’s just one of numerous projects that have occupied their time in the last few months. Anyone who has experienced sight problems knows that maintaining contact with the outside world is vital. The family have bought a tandem so Ruby can enjoy the freedom of cycling, through the RNIB she has also managed to find a pen friend and the Holdings have also recently welcomed a new member into the family - Giles, a rather large Labrador who they were matched with under the Buddy Dog Scheme.

Launched two years ago by Guide Dogs, it uses animals that haven’t qualified as mobility assistance dogs to improve the quality of life of blind and partially sighted children. It’s partly about enhancing their sensory and physical development, but it’s also hoped the responsibility which comes with looking after a pet will also boost self esteem and counter any feelings of isolation and depression.

“We had already been thinking about getting a dog and when we heard about Buddy Dogs and it just sounded perfect,” says Julia. “Giles is so gentle, Ruby just loves him, and if we could we would change his name to Aslan from the Lion, the Witch and the Wardrobe.”

Ruby is also currently learning to touch type and read braille - she’s already got the alphabet down pat and is awaiting the arrival of a new piece of kit which should make communication even easier. “We are all on a massive learning curve,” says Julia. “I have to say the visual support team from York City Council have been fantastic and because of the support we’ve had in some ways we do feel very lucky. Technology will be key for Ruby. Ten or 20 years ago, the picture might have been very different, but there is so much out there now, the only problem tends to be the expense.”

One thing that has helped both Julia and Steve cope with all the uncertainty has been their fundraising efforts for both the RNIB and the Brain Tumour Charity, specifically its HeadSmart campaign, which aims to reduce diagnosis times to under five weeks. Together with two other mums whose children have also been treated for brain tumours, they are giving information packs to GP surgeries in York and are hoping the city’s schools will sign up to a similar scheme.

“Everyone knows what the signs are now for meningitis and we want the same awareness for brain tumours,” says Julia. “If a child complains of blurred vision, if they are vomiting or having problems with co-ordination we want parents and children to think right this might be a brain tumour it needs to be checked out quickly. Early diagnosis is key.”

The couple, along with Ruby, Hattie and 16-year-old son Sam have also proved pretty formidable fundraisers. Last year, Steve raised more than £11,000 for the RNIB after grabbing a last minute place in the London Marathon. Despite a lack of training he completed it in six hours and three minutes. Julia has prepared a little better for this year’s event and while she’s currently nursing an injury is determined to beat her husband’s time.

“He would never let me forget it if I didn’t,” says Julia. “I have suddenly found my competitive spirit.”

When Julia crosses the start line, Steve, Hattie and Owen will be there to cheer her round the 26 mile course. Ruby won’t be though as the race clashes with a pre-arranged brownie camp. “I’ll be thinking of mum though,” she says. “But there’s no need to worry, I know she’ll be just fine.”

Tomorrow: Inspirational grandmother Pamela Arundel Clarke on why she’s still working at 86.