Connor was an artist who loved music, singing and computer games. He had Duchenne muscular dystrophy and was supported by Naomi House & Jacksplace for over 15 years. This is his inspiring story.
Connor was a creative, artistic young man with a great sense of humour. He was diagnosed with Duchenne muscular dystrophy at the age of 4½, and died at just 24 years old. He and his family have been supported by Naomi House & Jacksplace for more than 15 years.
This is Connor's story, bravely shared with us by his mum, Louisa.
We were given Connor’s diagnosis of Duchenne muscular dystrophy when he was 4½. We were told to ‘just enjoy him’, because he would be in a wheelchair by the time he was eight and would be lucky to see his teenage years.
From the moment we were given the diagnosis our whole lives changed. We were thrown into a world of disability and unfamiliar words and all we could focus on was the end result.
We learnt that Duchenne muscular dystrophy is a terminal condition which, over time, causes the muscles to weaken. It took me a year to recover from the shock of the diagnosis but it was Connor who helped me. He was so strong-willed and matter of fact and we were always open about everything. Connor had a great personality and in some ways he was stronger than me. I remember him saying to me towards the end of his life, ‘this is Duchenne for you mum, you'll be OK’. Even at that point, he was still worrying about me.
I decided I was going to give Connor the best life possible and I can say now that I don't have any regrets. Connor had a great life and I'm really proud of that because it’s what I could do for him. I couldn't cure him, I couldn't make him better, but I could make him happy and Naomi House & Jacksplace were there for us when we needed them.
Our local GP told us about Naomi House and at first, we didn’t want to accept that Connor needed a hospice. However once we were there, when Connor was around nine, we thought it was just lovely. While Connor would be looked after by the care team, his younger brothers Taylor, Mitchell and I would stay in the bedrooms upstairs. It was a fantastic break for us and we used to visit regularly.
It was hard for me and it was hard for Connor to put trust in other people delivering his care. But he got to know the staff well and even at the end of his life, there were a lot of people who had been there since he started visiting. Connor loved to banter and had a sense of humour that was sometimes a bit close to the mark! They got to know each other well and I knew he was in safe hands. In his teens, he also joined in with the peer support group activity days for boys with Duchenne.
Duchenne is a really cruel condition because it doesn't affect the brain. Connor had no cognitive difficulties at all and was aware of everything.
He had been able to walk, but by the time he was 8 he couldn't weight bear anymore and had to start using a wheelchair full time. At 12 he’d lost the use of his arms, so couldn’t raise them. He loved gaming on the computer but by 16 he could no longer play on his Xbox. This was so hard for him, so we organised a charity fundraiser and raised enough money to get an adaptive PC and with that he was able to launch his own YouTube channel.
Connor started to use a ventilator at night to help him breathe but the disease progressed and he became fully reliant on it by the time he was 19.
Connor started going to Naomi House & Jacksplace at a young age, before the real deterioration kicked in and he built up a great rapport with the staff. So when Connor started using the ventilator he already trusted them. As his health deteriorated, he was more comfortable relying on them for his care.
Connor loved music and he loved to sing and while his health allowed, we made sure he had lots of fun by arranging for him to meet every celebrity that he liked. We were often at Wembley and the O2.
Connor loved gaming, he enjoyed watching movies and playing board games with the staff at Naomi House & Jacksplace. He had a real passion for cooking and was very good at directing other people!
The support our family received from Naomi House & Jacksplace was amazing, even for Connor’s brothers. Having Connor in their lives and attending the sibling groups at Naomi House when they were younger has made his siblings better people, they are so accepting. The brothers all got to know Jenny, the Children and Young Adults’ Support Worker, and she’s seen them all grow up over the years.
A regular neuromuscular clinic is held at Jacksplace for young adults with Duchenne and Connor would go and stay for a few days around that time. Medical professionals would come to the clinic from the local hospital, rather than Connor having to go to many different appointments and he thought that was amazing.
In October 2021 everything changed very quickly. I was getting Connor up in the morning but he was having trouble breathing and his heart rate had risen to a dangerous rate of 160. I dialled 999 and the paramedics were there within 10 minutes, but even they couldn’t get his heart rate and fluid build-up under control. They wanted to take him to hospital, but Connor was adamant he didn’t want to go. We explained to him that he couldn’t stay at home because I didn’t have what he needed to keep him comfortable.
For a few years Connor had been helped with managing his symptoms by Dr Amanda Brain who is the Associate Specialist in Palliative Medicine at Jacksplace and University Hospital Southampton. Connor trusted her and she explained to him what his options were. Connor was a young man who knew his own mind and wanted to control as much of his life as he was able. He wanted to prioritise being comfortable, so because he couldn’t be at home, he chose to go to Jacksplace.
I phoned Naomi House & Jacksplace and within half an hour the arrangements were made and Connor was taken straight there by the ambulance crew.
We thought that after some time in Jacksplace Connor would feel better and would be able to come home again. The team at Jacksplace had given Connor fantastic support over the years and he’d bounced back so many times. However, after a week or so, his breathing was getting worse and he couldn’t even tolerate us detaching the ventilator for a few seconds to clean it.
That’s when Connor knew he wasn’t going home.
All the time Connor was at Jacksplace, he was being so well cared for. The staff were so on top of everything, I knew he was in the right place. He had all his home comforts and there were people around him that knew him well.
Connor adored the staff and Fi, one of the carers would come in and give him a massage, which he loved. On 30th October, Connor’s 24th birthday which turned out to be his last, the staff organised a little party for him and our family were able to come in and share it with him. He was so poorly, he had two syringe drivers giving him his medication, a ventilator and a feeding pump.
The hospices began to get quite Christmassy and much to Connor’s disgust, I wanted to have a Christmas tree in his room, but Connor said 'no mum, it’s November!' But he and his younger brothers did meet Santa when he arrived in a helicopter to the grounds of the hospices.
That was just a few days before Connor died.
Connor stayed at Jacksplace for five weeks and by the end of November, his health had deteriorated and he was struggling. I didn’t want to leave him. My mum joined me and we were with him constantly in his last week. We couldn’t turn the disease around or take his pain away, so we made the difficult decision to gradually reduce the ventilator.
Connor slipped away peacefully at 7.30pm on the 15th December 2021 with me and my mum telling him that we loved him. He was on medication so we knew he wasn’t in pain and it was just like he was falling asleep. He was very peaceful.
Dr Amanda stayed with us holding his hand, and the staff said we could take as much time as we needed. Part of me wanted to stay there with him, but the other part of me knew it wasn't him there and I just wanted to get back to hug my other children.
We went back the next day to the Ocean room, which is a special bereavement bedroom at Jacksplace. The staff had made it look so lovely and had put a little Spider-Man toy with Connor because he was a big fan of the films and they also put his favourite YouTube blanket over him. One of his brothers said he looked like he was sleeping.
They would have kept Connor at Jacksplace for as long as we wanted them to. However, for us, his family, it was just his shell and it was broken. We said goodbye and it was really hard.
We had a small funeral with immediate family and close friends who saw him regularly and then a massive wake for him in January and all his friends from college came. Talking to his college mates and hearing the impact that he had on their lives made me feel proud. He was there for everyone else, as well as me.
I’ve had support from Jenny and Martina in the family support team at Naomi House & Jacksplace. They all know me well and knowing that they’re at the end of the phone if I need help is amazing. I have benefited from the parents’ groups and remembering days and it's good to be with people who understand what I’m going through. Connor’s little brother, Jackson, painted a pebble for him and we placed it in the memory garden at Naomi House & Jacksplace on Remembering Day. We can visit the garden whenever we want.
I can't imagine how I would've got through those final weeks if we didn't have Jacksplace, because Connor was adamant that he didn't want to go to hospital. To have the support from people who genuinely care has been amazing. We would've been lost without them.
Louisa also filmed an incredible video sharing their family story. Hear the inspiring story from Louisa in the short film below.