The hope and anticipation felt by Holly Greenhow and her family when their flight touched down in Los Angeles was tempered by not a little trepidation.
It was, they were all acutely aware, a leap into the unknown.
Holly, 11, who captured the nation’s hearts three years ago when she starred in a Boden modelling campaign, has cerebral palsy and has been severely physically disabled since birth. She could neither walk nor talk and it seemed that was how it would always be.
Then, last year, came a flicker of hope. Having been told of a clinic in California offering pioneering stem cell treatment that had produced extraordinary results with stroke victims and cases similar to Holly’s, the Greenhow family boarded a plane in October.
There was a possibility, they were told, that some of the damage to Holly’s brain could be repaired, perhaps even enabling her to walk and talk one day.
It sounded miraculous but the family had no idea what the outcome would be.
‘We knew we had to give it a go,’ says Holly’s mum Fiona. ‘The worst that could happen, we were told, was nothing. It couldn’t harm Holly.’
The family went to see Dr Bryn Henderson, who runs the Regenerative Medical Group, the day after arriving in America, thinking it would be an introductory meeting. But after an ebullient greeting, Dr Henderson said briskly: ‘Let’s get on with it. Today’s gonna change your life.’
Holly was first sedated, then given, via a drip, an infusion of stem cells from the amniotic fluid of women who gave birth by elective Caesarean.
The idea, Dr Henderson told Holly’s parents, 45-year-old Fiona and Paul, 48, was based on a simple premise: the stem cells travel to the area of the body that needs help — in Holly’s case, the damaged part of her brain — then multiply, creating new cells to replace dead ones.
Stem cells can develop into many different cell types in the body during their early life. When a stem cell divides, it has the potential to become another type of cell with a more specialised function, such as a brain cell.
Holly’s parents were told that the stem cells’ ingenious work could go on for up to two years after treatment.
The procedure cost £10,000 —paid for by the family — and took just two hours. Holly, although a little woozy from the sedation, was soon back to her old self.
Dr Henderson had warned Holly’s parents that the nature of the treatment meant there would be no ‘Hallelujah moment’, rather a gradual improvement.
But when the family arrived back home a week later, something very strange occurred. Holly, always a light and fretful sleeper, began to sleep through the night. Her eyesight improved — backed up by an eye test which for the first time showed near-perfect vision.
Then, most miraculous of all, Fiona, who is responsible for trade planning at Tesco’s convenience stores, and Paul, managing director of a food manufacturer, began to hear Holly utter her first words — previously limited to a mumbled ‘Mum’.
First came ‘hello’ and ‘bye’, followed by ‘dancing’, ‘trouble’, ‘game’ and ‘Ninja Warrior’.
Other phrases soon entered the mix: ‘on my own’, ‘yes you can’ and ‘how are you?’.
Then, two weeks ago, Holly’s brother Oliver went into Holly’s room and she said ‘Oliver’.
‘It’s not even a particularly easy word to say. Holly was so proud of herself,’ Fiona remembers.
And there has been dramatic improvement in Holly’s control over her body. She now flails her arms and legs much less and much more slowly.
‘Her condition isn’t degenerative but it won’t get better on its own,’ explains Fiona. ‘So any improvement we see has come about as a result of the stem cell treatment or the other therapies Holly has had.’
So is the stem cell treatment the miracle that it sounds? Professor Brendon Noble, adviser to the UK Stem Cell Foundation, says caution should be exercised in interpreting Holly’s improvement.
‘There is not enough known,’ he says. ‘Any new medicine or drug or stem cell therapy has to go through clinical trials, for safety checks and also to prove that it does something positive with respect to the condition.
‘This has not gone through clinical trials and has not been proven to work. Scientifically it is incredibly complex. If you’ve got some stem cells, they can turn into different cells but they normally turn into a particular cell type because they have a particular cue — they are prodded to do it, by us in a lab or a medicine production unit,’ he says.
‘Squirting them into the body and hoping they do what you want them to do . . . it’s just uncertain. But I celebrate the fact that there appears to be improvement.’
Holly’s cerebral palsy was caused by her traumatic birth in November 2005.
Fiona’s labour was progressing normally when her Caesarean scar from her son Oliver’s birth two years earlier ruptured in her womb. Fiona was examined and told that Holly’s head had moved into her mother’s abdomen as a result — the doctors would have to perform an emergency Caesarean under general anaesthetic.
The placenta had broken away; Holly had been without oxygen for 35 minutes.
Doctors said if she survived she would be ‘brain dead’.
At one week old, Holly was given an electroencephalogram to record electrical brain activity. Confounding the prognosis, it indicated only moderate damage. The doctors refused to believe it and told Holly’s parents to take the results with ‘a pinch of salt’.
|Holly with her mother Fiona, left, and with her older brother Oliver|
Aged two, Holly was diagnosed with athetoid cerebral palsy, a condition characterised by involuntary body movements. She was, however, ‘intelligence intact’, as it is termed. The family home near Huntingdon, Cambridgeshire, was adapted around Holly’s needs.
Because she has no mental disabilities, Holly’s parents felt she should go to a mainstream school. She was enrolled at Hartford School in Huntingdon, where she is treated like everyone else except that she has a teaching assistant to help her.
Last year, Holly did a three-week ‘brain mapping’ course at a London-based clinic, during which a cap is placed on the patient’s head and sensors detect how the brain is working. A computer compares brain activity to goals or targets you wish to reach.
Sounds and images tell you when your brain has reached its goal and when it hasn’t. In this way, the user is said to learn how to quieten brainwaves associated with low performance and increase those associated with high function.
Holly also began, every other night, to receive treatment in a so-called ‘Mollii’ suit. The two-piece suit, rather like a wetsuit, gives mild electro-stimulation to target muscle groups, which is said to help relieve motor disabilities and aid muscle function.
She also takes anti-Parkinson’s medication to control dribbling.
Professor Noble says the fact that Holly is having more than one treatment makes it harder to pinpoint which is working best.
Following last October’s stem cell treatment, Fiona was advised to keep a diary of any differences she noticed in Holly.
‘In month one, I noticed how much better she was sleeping. She showed signs of wanting to be more mobile. For example, she wanted to walk from her bed to the loo, with us holding her up. She started saying the odd word.
‘At the end of the first month, she told me she could see better and we discovered through the eye test that her close-up vision was much sharper. Her concentration improved, too.
‘In the second month, more words started coming out. At the end of month three there have been other little things we’ve noticed. Cutting Holly’s nails can be a trial because Holly can’t keep her hands still, but Paul said it was the easiest it had ever been.
‘Her breathing has always been very fast and now she is starting to control it. She can open her mouth wider and put her tongue out, which she couldn’t before.’
In September, Holly will move on to secondary school.
‘When we decided to do the stem cell treatment, my imagination went on all sorts of flights of fancy,’ says Fiona.
‘I know we have to be realistic, but so many amazing things have happened. What we would love is for Holly to be able to learn how to speak fluently.
‘And who knows, it could happen — we’re just at the beginning of this adventure.’