Alan and Harry Northmore will be among the tens of thousands of people taking part in the 2026 London Marathon, two weeks today.

The pair are raising money for the Great Ormond Street Hospital which treated Alan’s son and Harry’s younger brother who has an exceedingly rare brain disorder called Hemimegalencephaly.

Mr Northmore said the staff at GOSH “work tirelessly to improve the quality of life and health of thousands of children”.

“We both know this first hand through my son/Harry’s younger brother, Josh, who has an exceedingly rare brain disorder called Hemimegalencephaly and is under the ongoing care of GOSH.”

Mr Northmore explained that Josh has had an “eventful journey during his first sixteen years”. 

Joshy

Joshua Michael Northmore – known to his family and friends as Joshy – was born on 4 November 2009.

“Although initially it appeared that all was well, it very soon became apparent that something was very wrong and after examination and scans we were told that he has a very rare brain disorder called Hemimegalencephaly,” explained Joshy’s dad.

“Essentially, the left half of Joshy’s brain had underdeveloped, severely stunting his overall development and resulting in him suffering from epilepsy and frequent seizures.”

Initially these seizures were managed by medicines, however after consultation with leading paediatric neurosurgeon the late William Harkness at Great Ormond Street Hospital in 2013, the decision was taken to operate to disconnect Joshy’s left hemisphere.

“Hence on my 50th Birthday on 25 February 2014 we travelled to GOSH and in a twelve hour operation under the care of Martin Tisdall and his team the disconnection operation took place,” recalled Mr Northmore.

“At 90% of completion proceedings unfortunately had to came to a halt due to a bleed (sincere thanks to those who give blood) and Joshy returned home after two weeks at GOSH to convalesce.”

Joshy’s eventful journey continued however, as he was also diagnosed with Hip Dysplasia.

This led to an operation on both of Joshy’s hips in July 2014, after which his legs were in a cast for eight weeks.

Pictured: Joshy Northmore after his operation in 2015, and (above) after his operation in 2014.

“Joshy with typical resolve and determination and too much family excitement went on to walk in 2015!” said his dad.

“Then in August 2015 we returned to GOSH for a second ten-hour operation again under the care of Martin Tisdall to successfully complete the disconnect of his left hemisphere. He was after this seizure free and no longer needed meds, however as he has grown, he has recently had to go back on to one to control what is expected to presently be relatively minor seizure activity, a further intervention trip to GOSH however unfortunately cannot be ruled out.”

Despite his continued challenges, Joshy is a “happy and cheeky young man who lives life to the fulness that his disability allows”, said his dad.

“There were points at which we did not think he would ever walk, or be able to communicate, however, he now walks well and independently and although he is still non-verbal he certainly understands the majority of what is being said to him and is able to effectively get himself across to people!

“He has enjoyed his time both at Le Rondin and now at Le Murier under the care and nurturing of the wonderful staff of both schools and also at the Croft.

Pictured: Joshy Northmore is a student at Le Muriel School.

“It is amazing how staff are undaunted in taking on all sorts of activities with him and I have yet to come across anyone who has not fallen in love with him within five minutes of meeting him, it is heartwarming, he is well loved.”

Hemimegalencephaly and Hip Dysplasia

Joshy’s two diagnoses affect his physical and intellectual development.

Hemimegalencephaly (HME), or unilateral megalencephaly, is a rare congenital disorder affecting all or a part of a cerebral hemisphere.

It causes severe seizures, which are often frequent and hard to control.

If the seizures are left uncontrolled, they often cause progressive intellectual disability, brain damage, and stop development.

Pictured: Joshy Northmore recovering from an operation in 2014.

Hip dysplasia is an abnormality of the hip joint where the socket portion does not fully cover the ball portion, resulting in an increased risk for joint dislocation.

The marathon challenge

To thank GOSH for all of its work with and the care of Joshy, his dad and brother set themselves a joint fundraising target of £5,000.

To raise that money they decided to run the 2026 TCS London Marathon.

The London Marathon is one of the world’s most iconic mass participation sports events and is recognised as one of the world’s biggest fundraisers.

Alan Northmore has run the London Marathon 10 times already but this is the first time for Harry.

“Back in 2013, I ran the London Marathon in aid of GOSH as a thank you for their support at the very beginning,” said Mr Northmore. “So, it gives Harry immense pride to be able to follow in his dads’ footsteps and say thank you for their help in getting Josh to where he is today.”

Pictured: Josh, Harry and Alan Northmore.

Harry echoed what his dad said.

“It gives me immense pride and honour to be running the London Marathon for GOSH, as I am following in my dad’s footsteps.

“He is my inspiration, and it will be his knowledge and guidance I rely on as I train for this challenge.”

While the pair have just two week’s to go and will now be tapering and preparing for the day itself, Mr Northmore is already looking to the future.

“Well, I guess it is a case of never again, yet again!

“I have a feeling that this is going to be the most challenging of my eleven London Marathon’s given my advancing years! I am immensely proud and honoured to be running with Harry and also for such a great cause.”

Alan and Harry Northmore’s fundraising page is available at justgiving.com.