A father of two from Poole in Dorset who is registered blind has raised over £4,250 for Fight for Sight by running 250km in January.
Dean Argent’s life was changed forever in 2012 when he was diagnosed with the rare genetic eye condition choroideremia and told he would likely be blind within a few years.
The 35-year-old said: “I had never had my eyes checked before but my wife said I needed to get them tested because I kept bumping into things. When I went for my test they took a picture of the back of my eye which showed up some black spots. I was referred to Bournemouth hospital and then to Oxford where I was told I had choroideremia.”
Choroideremia progressively leads to blindness due to a gradual loss of cells in and around the retina, the specialised light-sensitive layer that lines the back of the eye. The condition is caused by a faulty gene which can be inherited and passed down through families. Men are much more likely to develop the condition, but women can pass the faulty gene on to their children. It is estimated to effect between 1 in 50,000 to 100,000 people in the UK.
Dean was working as a floor layer at the time of his diagnosis. His wife Rio had just had a baby and he was supporting his family. However, after his diagnosis, Dean could no longer drive and was forced to give up his trade. He went to work in a shop instead, but the family struggled to manage on his reduced salary and were even served a notice from their landlord who refused to accept a tenant on benefits. Dean eventually decided to return to work as a floor layer and pay for a driver to drive him to his jobs, which he did until his sight deteriorated to a point that it was no longer possible to continue working. Dean is now registered blind and looks after his kids, aged two and eight, full time while his wife works.
He said: “I miss working and I hate being stuck in the house, so I am going to look for work in a few years when the kids are older, but it’s really hard to know what to do. There are jobs that are suitable for people with sight loss, but a lot of them involve working on computers or talking on the phone which I find really difficult. I’ve always done floor laying so I’m a bit lost.”
Dean has described his struggle of adjusting to living with sight loss and says people are not always very understanding of his condition, particularly as it is not always obvious that he is blind.
He said: “I have roughly six degrees of vision left so it’s difficult when I go out because I can’t see if there’s someone next to me, or if someone is in front of me until they’re quite close. I don’t carry a cane or have a guide dog so I don’t look like I’m blind. I’m also quite big and I have a lot of tattoos so if I bump into people in the street or in the supermarket, they think it’s because I’m a thug, they don’t understand that I literally can’t see them. It’s been much harder during the pandemic too because I can’t always see people to be able to socially distance so I just don’t go to the shops anymore.”
However Dean’s family have been a huge support to him.
He said: “My kids are fantastic – my daughter Laila will help me and she wears a reflective t-shirt when we go out so I can follow her and she always looks out for me. She’ll tell me if there’s something in my way and she’ll pick up her little sister’s toys to make sure I don’t trip over them. She is classed as a young carer and she attends a young carer group at school for peer support.”
Dean started fundraising for the Tommy Salisbury Choroideremia Fund through Fight for Sight in the hope that some day there will be a widely available treatment for his eye condition. Dean has now successfully completed his challenge and is encouraging others to go out there and do the same.
Through the Tommy Salisbury Fund, Fight for Sight funded vital early-stage research at Imperial College in 2008 that has led to the development of a new gene therapy treatment for choroideremia. The gene therapy is already halting the disease and even restoring sight for some patients at clinical trial. It’s hoped it will be approved for use by the NHS in the next few years.
Dean said: “I want to raise money for eye research so that one day there could be a cure for choroideremia. My two daughters are carriers of the faulty choroideremia gene so I hope that by the time they have children and sons of their own, there will be a treatment available.”
Director of Engagement at Fight for Sight, Ikram Dahman said: “We are so grateful to Dean and all our fantastic supporters who fundraise so tirelessly for eye research. People with sight loss and eye conditions depend on vital research to find treatments and cures for their conditions, which otherwise would not be funded. Eye research was already woefully underfunded before the pandemic, with only 1.5% of public research funding going to this vital area. We’re 100% dedicated to funding the best eye research in the UK and need the help of supporters like Dean now more than ever to make sure vital research into new treatments doesn’t stop during the Covid-19 pandemic and beyond.”
A local exercise group in Dean’s town Collective Conditioning has been helping him with fundraising. The team set out to walk, run, row, ski or bike 250km collectively in two days, but ultimately smashed their target by achieving 920km and raising more than £600.
If you would like to donate to Dean’s fundraiser, you can do so by visiting his Just Giving page here.
Read more about choroideremia