An amazing family are taking on several challenges to raise money for Evelina London as a thank you for the care given to their disabled twins.
Georgie and James Melville-Ross have spent more time at Evelina London than many of the staff. Their 13-year-old twins – Alice and Tommy – were born at St Thomas’ four months early, at just 24 weeks. Both children were critically ill when they were born and were only given a one in five chance of surviving. Alice suffered four heart attacks within hours of birth and within days Tommy almost died from a haemorrhage in his lungs. They were cared for in the Neonatal Unit for nine long months before being allowed home.
The twins have severe quadriplegic cerebral palsy with dystonia. Cerebral palsy is caused by a problem in the parts of the brain responsible for controlling muscles – and this affects the whole of their bodies, giving them uncontrolled muscle contractions. They have been supported by Evelina London since the age of two under Dr Jean-Pierre Lin and his team at The Complex Motor Disorder Service (CMDS).
James has written a book about their lives, an honest account of life with disabled children. He describes ‘Two for Joy’, written on his commute to work, as ‘a diary to make sense of the whirlwind’.
The whirlwind for both James and Georgie is non-stop, a life full of caring for the twins – and their younger sister India – and frequent hospital visits.
Intensive care and emergency surgery
Both children had deep brain stimulator surgery back in 2008 and 2009 – this surgery implants electrodes into the brain to deliver electrical currents to help reduce the involuntary muscle spasms. Tommy was a pioneer – the smallest child and one of the youngest – to receive a new, rechargeable device. Sadly, Tommy’s deep brain stimulator became infected in November 2012 and the whole system had to be removed.
‘The knock-on effect of not having the stimulator was that his body went in to shock and his dystonia spiralled out of control,’ Georgie recalls. He had to be hospitalised as his organs started to shut down and he spent several months in intensive care. He had emergency surgery in December 2012 as intensive care were not able to control the extreme state of his dystonia through drugs and he was going to die.
‘The tireless and dedicated work of Dr Lin and the CMDS team together with PICU [the Paediatric Intensive Care Unit] and the Savannah nurses saved my son's life and very gradually Tommy started to calm and his body repaired itself,’ Georgie says.
Keeping promises and taking on challenges
Tommy finally left Savannah ward in July 2013. ‘We have spent the last three years gradually rebuilding our son,’ Georgie says. ‘I made a promise to Tommy when we left the hospital that I would run a marathon to say thank you to the incredible people who work so tirelessly to help children like mine. I want to show maximum respect to my twins who I am humbled by every day for all that they go through with their bodies but still manage to laugh and smile.’
Georgie ran the London Marathon with her sister Edwina. She had to juggle her training with splitting her time between her children. Since the new year, she’s spent a number of weeks with Alice in Evelina London being treated for various complications associated with her increased dystonia as well as a chest infection and strain of flu.
Running isn’t the only challenge the family have successfully taken on this year
In May, the whole family – wheelchairs and all – used a highly sophisticated rope system to share the load and pulled the twins up to the summit of southern Britain's tallest mountain, Pen y Fan. As they arrived at the peak, they were greeted by spontaneous cheers and applause from other climbers, stunned by their amazing achievement. At the top, the collected kids released Evelina balloons into the sky to remember all of the other children cared for at Evelina London, those who have made it and those who haven’t.
The ambition of the family to climb Mont Blanc in June – Western Europe’s biggest mountain – was impacted by the weather making it impossible. However this did not stop them! They instead spent the week scaling three mountains in three different countries – Pointe Larchenal (3,613m) in France, Aguille du Tour (3,540m) in Switzerland and Italy’s highest peak (4,063m), Gran Paradiso.
We are just an ordinary family but with extraordinary children and I want people to understand more about dystonia and how it affects and impacts children like ours,’ says Georgie. ‘Without the extensive input of Dr Lin's team, I'm not sure where we would be now.’