Darlington Family Runs Manchester 10K to Support Son with Ultra-Rare Genetic Condition

01 May 2024

Darlington Family Runs Manchester 10K to Support Son with Ultra-Rare Genetic Condition

A dedicated Darlington family and 14 of their friends are participating in the Manchester 10K at the end of May to raise funds for their four-year-old son, Connor Murphy.

Connor's Story

Connor Murphy was diagnosed with the ultra-rare genetic disease HIVEP-2 at age two after not meeting developmental milestones. Following extensive testing, a 'Genetic Alteration Variant of Uncertain Significance' identifying HIVEP-2 was found. Currently, only 16 children globally have been recognized by the NHS with this alteration, and Connor is the only one in the UK.

Ben Murphy, 33, Connor’s father and a Military Policeman, said:

“Connor can’t walk unaided, has muscle weakness, and lacks dexterity. He is also non-verbal but communicates through Makaton. He enjoys books, animals, and motorsports but often gets frustrated when his hands can’t keep up with his thoughts.”

Ben expressed gratitude to the military for relocating them to a bungalow where Connor’s bedroom is on the same floor, enabling him to easily access the garden in his wheelchair.

“We’re raising money to make life easier for him at home with modifications like wheelchair ramps, hoists, and adapted furniture. We also aim to give him the best chance to reach his full potential with additional therapies.”

Becki Murphy, 30, Connor’s mother and a scientist, added:

“Connor loves hydrotherapy but only gets three sessions a year on the NHS. We hope to provide more privately and explore equine therapy for core strength, balance, and confidence.”

Family and Friends Unite for a Cause

Connor’s parents, along with several family members and friends, will be running the Manchester 10K on May 26 to raise the necessary funds for these vital resources.

Support from Tree of Hope

The Murphy family is supported by Tree of Hope, a children’s charity that assists families in fundraising for healthcare needs not provided by the NHS.

Becky Andrew, Tree of Hope CEO, said:

“We’re delighted to see such community support for Connor’s family. We wish everyone an enjoyable run in Manchester and are here to support in any way we can.”

How to Help

To learn more or donate to Connor’s fund, please visit Tree of Hope’s website.