‘She’d be the only one in a wheelchair in the mosh pit,” Steven Bangham laughs as he sums up his daughter Danielle’s incredible spirit.
“She was a fighter and wouldn’t let things get the better of her.”
To say the 23-year-old was a fighter is somewhat of an understatement. Danielle, and her family, had to battle constantly from the moment she was born.
She was given an hour to live. She defied doctors.
She was told she would never go to a normal school. She earned an HNC from Stevenson College.
She would never be able to work? She created an online music magazine with subscribers around the world.
It really did seem the Broomhouse girl had the courage and determination to overcome whatever life threw at her. Tragically her ultimate dream – of beating muscular dystrophy and being able to walk before the age of 30 – is one she will never realise.
Danielle died suddenly in hospital earlier this month to the shock of her devastated family and friends. They had become so used to her bouncing back, ready to tackle the next challenge.
Indeed as Steven reflects on his daughter’s lasting legacy, he can only describe her as a true “inspiration”.
He speaks with justifiable pride of her numerous achievements, but most of all the backdrop of disadvantage which she shrugged off with a smile at every stage.
“When she got her HNC from Stevenson at the Usher Hall, that was a real lump-in-the-throat moment,” says the 47-year-old, gazing at a photograph of her holding her parchment.
“But even that wasn’t straightforward. She had to come on and go off from the same side in her chair, but it was a great moment and she got loads of applause.”
From the doorway of the family living room mother Julie, also 47, adds: “It was a bit of a ‘that shows them’ moment, because education has always been so hard for her, she’s had the door slammed in her face every step of the way.”
Danielle faced the challenge of being wheelchair-bound as soon as she became too big for a buggy.
Her parents too faced challenges; both of them having to give up work to care permanently for Danielle and her brother Steven, who is four years younger and also has the illness.
Despite being of equal intelligence to her peers, poor access at city schools meant Danielle had to be taught alongside those with learning disabilities.
Obtaining the necessary support has also been arduous for her parents. Until they recently secured additional care – after another lengthy battle – they had to take turns to sit up all night, every night with Danielle to make sure complications did not occur with her oxygen mask, which she required after fighting off pneumonia several years ago.
“She was given an hour to live,” says Steven. “But she fought back from it, just like she always did.
“That’s why we were so shocked when she passed away.
“We took her to hospital but the tests seemed fine, we thought it was just a case of her being run down after the cold of winter.
“When someone with muscular dystrophy gets a cold that might hang around in you or me for two or three days, it can affect them for weeks.
“But then the results showed that nothing was getting better, and I think she knew at the back of her mind as well.”
His wife adds: “She said that if she went to sleep she wouldn’t wake up again, and that’s what happened.”
Tests revealed at the age of six months that Danielle was suffering from MD, making her only the sixth ever girl in the UK to be diagnosed with what is an overwhelmingly male disease.
At first medics thought it was the more common Duchenne’s type, meaning she would almost certainly not survive her teens.
In fact, both her and her brother suffer from the congenital type, which is life-limiting but not life-threatening.
“We used to keep an eye on stem cell developments,” says Steven. “Anything would be too late for her, but might come in time for her brother.
“She told us she had a dream that when she was 30 she would walk. She won’t realise that dream now.”
The Banghams launched a high-profile fight with the council when they fought to have their daughter accepted into a mainstream school.
She had been forced to leave Fort Primary because the Leith school could not cope with her mobility issues, and was eventually forced to enrol at Graysmill, a school for those with learning disabilities.
“It was really hard for her, and extremely frustrating,” says Julie. “Everyone acknowledged she was too bright for this, but the situation was they could cope with her needs, so it was either that and get a low level of education, or nothing.
“In second year they were asking her how to spell ‘dog’, it was awful, how is someone supposed to progress when faced with something like that?”
The desperation of the situation forced them to take her out of the special school and home teach her.
Steven says: “It was her dream to go to university, and she managed to get into Stevenson to do digital art and design.
“Even that had to be done in a roundabout way, taking an access course, again designed for those with learning disabilities.
“When she was doing that she found a way to contravene the college IT rules and get into a chat room, and the tutors couldn’t believe it.
“She was supposed to go on to university as well, but that was another door slammed in her face, and she lost a bit of heart after that.
“Nothing was made easy for her, or us. We’ve had to fight for absolutely everything. Care packages, schools, the car to take her around, her wheelchair. And it all takes so long, you don’t realise until you have to go through it.
“We’ve had politicians round to supposedly help, but nothing’s made a difference and you get to suspect they’re doing it for their own reputation.
“But she took it all in her stride.
“She loved music and went to gigs, we’d take her all over the country, and she’d be the only one in a wheelchair in the mosh pit.”
One of Danielle’s legacies will be the online music magazine she created, The Rockette.
From her room, she would interview bands, review songs and albums, and design the impressive virtual publication from scratch.
She had subscribers from around the world, and interviewed up-and-coming bands, as well as featuring gig reviews.
For now the family are undecided on whether to continue the magazine in tribute to Danielle. At the moment they are focusing on her memorial service, and the ongoing care of her brother.
“We’ve got a lot of the same challenges with Steven. Luckily he was able to go to Balerno High School and get some Standard Grades, and he’s now at college too,” said Steven.
“She’s been a real inspiration for him I think. In fact she’s an inspiration for lots of people.”
• Danielle’s memorial service will take place on Friday at Mortonhall Crematorium at 10am, followed by a burial at Morningside Cemetery.
MUSCULAR Dystrophy is an umbrella name for a number of genetic disorders attacking the sufferer’s muscles.
Some are more severe than others, ranging from complete paralysis and a short life expectancy, to a more mild condition controlled by drugs and allowing the patient to live fairly independently.
The most common form is Duchenne’s, which affects only boys, and degenerates to the point where life expectancy is placed at late teens or early 20s.
Danielle, and her brother Steven, had the congenital type of the illness, which is described as “life limiting” rather than “life threatening”.
That means if patients avoid some common pitfalls associated with the disease, such as susceptibility to colds and flu, they can expect to live to a normal life span.
It affects around one in 50,000 in the UK, mostly males, and does worsen gradually as the person ages. Muscles in the body are weak, and the condition can also prompt respiratory problems.
As in Danielle’s case, the symptoms are present from birth, and there is no known cure and many patients, such as Danielle, are never able to walk, though families, charities and campaigners watch closely as stem-cell technology develops.
Despite the lack of cure, there are measures which can alleviate some of the symptoms, and numerous support networks and charities across the world.