A Middleton family is hoping their popular annual event, Gig in the Garden, will help raise vital funds for their four year old relative Connor Murphy, who is living with a condition so rare that doctors are unable to offer a definitive diagnosis.
Connor, who lives with his parents in Darlington, has a genetic alteration known as HIVEP2. The condition is linked to developmental delays, muscle weakness and speech difficulties. He is unable to walk unaided and is non-verbal, although he communicates using Makaton and gestures. According to NHS data, Connor is one of just two people in the UK and only 55 worldwide known to have these specific genetic characteristics.
Despite the challenges, Connor is thriving in his own way. He attends a specialist SEND school and has made significant progress since starting. His family hopes that with ongoing therapy and support, he may one day walk independently. “There are children with the same condition who’ve learned to walk at around nine or ten, so we’re hopeful,” said his father, Ben Murphy, a 34 year old military police officer.
Ben, his wife Becki and their wider family are now focusing their efforts on raising money for essential therapies, equipment and home adaptations that will help Connor live more independently. This includes wheelchair ramps, hoists and adapted furniture to support his development.
The Gig in the Garden event on 25 May at the Ring o’ Bells in St Leonard’s Square, Middleton, is central to these fundraising efforts. Organised by Connor’s Middleton-based relatives, the day long event will feature live music from local acts, raffles, bake sales and family friendly entertainment. Entry is free, with donation buckets available throughout the venue. Last year, the event raised approximately £4,000 for children with disabilities, and organisers hope to exceed that figure this year.
In addition, a group of around 15 friends and family members will also be running the Manchester Half Marathon and 10K in May to support the cause.
The family’s fundraising is being carried out in partnership with children’s charity Tree of Hope, which assists families raising money for healthcare treatments and services not available through the NHS. The charity helps with campaign development, financial oversight, gift aid claims and access to corporate support.
Tree of Hope CEO Becky Andrew said: “We wish Connor and his family all the best with their fundraising activities. We are pleased to give them support in reaching their fundraising goals.”
Connor’s story has also been shared on a dedicated JustGiving page, where donations can be made directly. His parents describe the last few years as a journey filled with uncertainty, but also immense pride in how far he has come. “We just take everything one week at a time, looking back in amazement and forward with hope to how much he can achieve,” they wrote.
All donations made through JustGiving will be securely processed and transferred to Tree of Hope. A small portion 7.5% will go towards the charity’s core costs. Any unused or surplus funds will be redirected to support other children under the charity’s remit if appropriate.
For more information or to donate, visit Connor’s campaign page on Tree of Hope.
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