‘Gig in the Garden’ event in Middleton for four-year-old with rare genetic condition

Connor's diagnosis of a rare genetic condition

Connor Murphy from Darlington was identified as having HIVEP-2 at the age of two after it became clear he wasn’t hitting his developmental milestones.

Following a series of tests, a 'Genetic Alteration Variant of Uncertain Significance' identifying HIVEP 2 was found, which means the doctors can’t officially diagnose his condition because there just isn’t enough known about it right now. There are currently only 55 children in the world recognised by the NHS to have this alteration – only two in the UK.

Connor’s dad Ben Murphy, 34, a military policeman said: ‘Connor can’t walk unaided, he has muscle weakness and a lack of dexterity and is non-verbal.’

‘However he can communicate to a degree through Makaton, and often gets frustrated when his hands can’t keep up with his thoughts! He enjoys, books, animals and watching any form of motorsports.’

‘He has recently started at a specialist SEND school and has progressed hugely since then. But there is still a long way to go.’

Fundraising for Home Adaptations
‘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.’

‘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 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.’

Fundraising events
‘Gig in the Garden’ is a regular event organised by Ben’s Middleton-based family which has raised thousands of pounds over the last 10 years for children with disabilities.

Ben added: ‘It’s a really fun event which runs all day and evening with live music from local acts and bands who are all donating their time for free, raffles, bake sales, events for children and much more. It’s free to come along and there are collection buckets on the bar!’

Ben, wife Becki, 31, and around 15 family and friends also took part in the Manchester half marathon and 10K in May to help raise funds for Connor.

Tree of Hope Fundraising Support
The family is being supported by children’s charity Tree of Hope, which helps families raise money for children and young people like Connor for medical treatments and healthcare services not freely available to them through the NHS and social care. The charity provides fundraising guidance, campaign development, financial management, charity registration and emotional support from the Family Support team. Families like Connor’s benefit from having the support, tools and resources to fundraise effectively as well as access to gift aid, corporate support while also providing donor reassurance.

Help to support Connor's campaign
To learn more about Connor or to donate to his fund, visit https://www.treeofhope.org.uk/get-involved/childrens-campaigns/connors-charity-support/.