Newsletter
Connor Murphy
28 Aug 2025
Connor: Living with a Rare Genetic Condition
Connor Murphy was diagnosed with Genetic Alteration Variant of Uncertain Significance,' labelled HIVEP-2, at just 18-months old. It is neurological and affects brain function, meaning he has development, intellectual and some physical delays, as well as hypertonia too, however, dad, Ben, describes him as “just a happy little chappy with a total positive attitude within every room that he goes to”. As the mutation is so extremely rare, with only around 60 cases known in the world right now, Connor’s family are still unsure on what the future may hold for Connor.
Fundraising for Connor and his Changing Medical Needs
As Connor has grown older, his parents and medical team have started understanding his needs more, which has led them to focus on strengthening his physical abilities and giving him the space that he needs for this. Dad, Ben tells us that they recently bought Connor “some parallel bars in the house for him to practice his standing and walking. He likes to play with the parallel bars as a game, so that enables him to do physio through play”.
Due to the larger scale of these items, the Murphy family also need to make home adaptations. Ben explained that “because some of his walking and standing equipment is on smaller wheels, it would get stuck in the carpet and it would hinder his ability and he'd get frustrated and upset. So, we changed out the carpet for hard flooring which obviously made a massive impact straight away. We've also got adapted bath facilities on hydraulics to raise and lower the bath, so that it's easier to get him in and out. It’s just all these little things that you never consider in the first place about what you're going to need to fundraise for. We're just raising money so that we can always have whatever he needs available to him”.
It is because of this support that Connor has come on leaps and bounds over the past few years. Ben states that “to someone that met him two years ago, he'd be unrecognisable to how much he's achieved now. So we’re really hopeful for the future and we're really looking forward to see how much he's going to develop and change in the next few years again.”
Fundraising Events: How to motivate yourself
Fundraising events and challenges have been the family’s biggest fundraising success to date. Reflecting on the support that they have received with their events, Ben recognises that he has a large and supportive family network who have played a significant role in their fundraising success but also admits that fundraising “is literally all about taking risks and putting yourself forward into a position that sometimes is slightly uncomfortable, but then it's easy to be uncomfortable when it's for your own child. It doesn't matter at end of the day how uncomfortable, stupid or daft I look because at the of the day I don't care: It's not about how I look, it's not what I achieve, it's what I'm doing for Connor and how he benefits from it.”
Fundraising Ideas: Running Challenges
The Murphy family suggest that for those struggling to get their heads around organising a fundraising event, then a running challenge might be better suited for them.
“With a run, it's such a simple thing to do because it takes away the planning and having to arrange something specific. It's just, train a little bit, take part, make everyone aware that you're doing it and then just go and do it on the day and enjoy it and spread the word whilst you're there. During the Manchester 10k a fellow runner was so moved by Connor’s story that he actually found the page after the run, sent me a message and then made a donation and shared it with his friends and family. That's the effect it can sometimes have going to a big public event and just showing that we're all there in the same boat. You'll find the good in people at public events like that."
Connor's Dad
Annual Fundraising events: Gig in the Garden
A yearly event that Ben and his family host is the ‘Gig in the Garden’ which is a longstanding event for the Murphy family, having been created by Ben’s uncle, over 10 years ago, which is now dedicated to supporting Connor’s campaign. The event includes music from local bands, a quiz, bake sales and raffles, and due to the family’s strong community connections, Ben says that “every year it's just jam-packed”!
Confidence in Fundraising and utilising Tree of Hope’s support
Utilising the Family Support service that Tree of Hope offers can often be the springboard in building your confidence and understanding of fundraising. Ben explained that “I think we've been quite lucky with having Tree of Hope dealing with us and helping us".
Some of the support received from Tree of Hope includes:
- Awareness Video creation
- PR support for local news articles and radio pieces
- Wide-spread reach
- A secure fundraising platform
Advice for Motivating Yourself with Fundraising
Fundraising often comes in waves: when putting on an event, you see donations flowing in, however, there can also be lulls in fundraising, perhaps between fundraising events, or if supporters are not reminded of the fundraising campaign. These lulls can often feel overwhelming and de-motivating and can really affect how you pick yourself up and continue with your campaign.
We asked Ben if he had any advice to families who were in this fundraising dip, and how they can motivate themselves to pick the fundraising baton back up. Here's some ideas he shared:
- Find a short amount of time to put some ideas together,
- Looking online at what other people have done: finding and idea and propose it.
- Get out of your comfort zone
- Utilise the support of Tree of Hope - "they can sometimes do the legwork to make that first step [with starting a fundraiser] which is sometimes the most difficult part”.
Find out more about Connor’s fundraising campaign here: https://www.treeofhope.org.uk/get-involved/childrens-campaigns/connors-charity-support/
