Father of five Alan Northmore and his eldest son, Harry, are set to run the London Marathon on Sunday 26 April, both to achieve personal goals and to raise money for the organisation that has provided extensive medical care to Alan’s fourth child, Joshua.
‘We’ve spent quite a lot of time there,’ Alan said.
‘Joshy was born and the left side of his brain didn’t develop properly. It’s a lottery thing, really. It just happens.’
Joshua’s condition, hemimegalencephaly, is a rare neurological condition that occurs approximately once in every 100,000 births. It refers to a malformation of part of – or the whole of – one of the brain’s cerebral hemispheres. The condition results in severe seizures, which, particularly in infants and children, can lead to brain damage and intellectual disability.
‘Initially he seemed fine, actually, but it became clear quite quickly that something was wrong,’ Alan said.
‘He was seizing quite a lot, so he was put on quite a lot of drugs to stop that. Then as he grew, we saw the doctors at Great Ormond Street, who decided to disconnect the left side of his brain.’
‘They did the first operation, and it was a long day – it was about 12 hours. Then he had a bit of a bleed and they had to stop. They’d only done about 90% of it.’
The surgery took place in 2014, when Joshua was only four years old.
The issue during the operation meant that the family had to return to the hospital a year later to complete the disconnect. As a result, Joshy became seizure-free and independent of medication for many years, although the family said that he was now back on a seizure medication and a further trip to Great Ormond Street cannot be entirely ruled out.
‘He’s been through a lot, but now he walks, albeit slightly unsteadily. He’s non-verbal, but he does get himself across,’ said Alan.
Joshua is now 16 years old, and is enrolled at Le Murier School.
Though it has now been years since the family has needed to take a trip to GOSH, their extensive history with it motivated Alan and Harry to raise funds for it on the marathon.
Alan has done so once before, backing the hospital through a marathon in 2013 – one of 10 he has completed so far. He said the prospect of taking on this one with his son made it twice as special.
‘It fulfils a bit of a dream for me, running a marathon with my son,’ he said.
For his part, Harry has little to no previous experience running, but is equally looking forward to participating in the event side by side with his father.
‘I got into it through him, and it’s birthed a real hobby for me,’ he said.
‘It’s a great escape.
‘It’s become the thing that I look forward to doing, and I’m not planning on stopping.’
Though Harry has an ambition to one day beat his father’s personal best marathon time – under three hours – this time, he is just looking forward to being beside him all the way.
‘It makes me feel quite proud that I’m running it with him,’ he said.
‘He keeps saying, “You’re going to have to run off without me at some point”, and I keep saying that’s not happening, because crossing the line alongside him is the big takeaway from it for me.’
The pair have set up a JustGiving page and have reached a third of their target so far.
They are hopeful that their run will be successful in supporting the organisation that has had such an impact on their lives.
You need to be logged in to comment.