Members of one Darlington family are set to run a 10k this spring to raise funds for a young boy who is the only person in the UK with an ultra-rare genetic condition.

Connor Murphy, 4, was diagnosed with HIVEP-2 when he was two years old, after it was found he was not hitting core childhood developmental milestones.

Despite tests identifying the disorder, doctors were unable to officially diagnose Connor because not enough is known about the condition, which is currently effects just 16 people in the world.

The Northern Echo: Connor Murphy, 4.Connor Murphy, 4. (Image: TREE OF HOPE)

Connor is nonverbal and needs help to walk which has led members of his family including mum Becki Murphy to take on the Manchester 10k on May 26.

The funds will be used to to make home improvements to help care for Connor.

Connor’s dad Ben Murphy, 33, said: “We’re raising money to help make life easier for him at home with alterations such as wheelchair ramps, hoists and adapted furniture and to give him the best chance of developing to his full potential.

“As there are so few children with this condition it is difficult to know exactly what his future will be, but there are children older than him who have learnt to walk aged about nine or ten.

“So we are hopeful that with the right therapy, he can do the same.”

Ben, who works as a military policeman, added: “The military have been very good to us and moved us to a bungalow so his bedroom is on the same floor and he can get out into the garden easily in his wheelchair.

“Connor also loves hydrotherapy but only gets three sessions a year on the NHS, so we are hoping to get some more privately, and are also looking at equine therapy which could help with core strength, balance and confidence.”

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On their journey, Connor’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children and teenagers like Connor with healthcare needs which cannot be provided by the NHS.

You can support the fundraiser here.

Tree of Hope CEO Becky Andrew said: “We’re really pleased to hear that Connor’s family has so much support in their community and we hope everyone enjoys the run and day in Manchester!

“Tree of Hope are here to support however we can.”