Nearly two years after Toby had to make the heart-breaking decision to turn off his soulmate Sonia’s life support, he will cycle the entire coastline of Britain in her memory to raise money for three blood cancer charities – Anthony Nolan, African-Caribbean Leukaemia Trust (ACLT) and Bpositive.
Toby Edwards, 42, from Shooters Hill, London, is cycling in memory of his partner of 21 years, Sonia Akow, who died of leukaemia in 2013 – a year after her mother died from the same condition.
Photo courtesy of Alex Griffiths
Soulmates and DJ duo Sonia and Toby had been together since they were teenagers and travelled the globe together, playing gigs across four continents.
Toby is setting off from Hastings on 11th May and aims to cycle the whole coastline of Britain in time to arrive back in Hastings on 3rd July, the second anniversary of Sonia’s passing.
Toby says, ‘Sonia was my best friend, my soul mate and literally 'other half'. She was only 43, and if you met her, you'd think she was half her age, not just because of her amazing ability not to age, but also because of her energy and vibrancy. I met Sonia when I was still a teenager, and so she has been there, every day, for my entire adult life.’
Sonia and Toby in the sunflowers at Kew Gardens
The 21 year love story between Toby and Sonia began when they met in a local pub in London whilst studying at City and Guilds of London Art School. The two went on to form a DJ duo under the name of ‘SOTO’, a combination of Sonia and Toby, and travelled the world together playing in all corners of the globe.
When the couple planned to settle down and try and start a family, Sonia started to feel unwell, experiencing extreme fatigue.
Sonia and Toby DJ-ing together as SOTO
Toby says, ‘She was getting tired when we were walking up hills and she couldn’t shake her feeling of fatigue. It was unusual because she was very fit and had never really been ill all her life. It got to the stage where she literally couldn’t get out of bed. We went back to the doctor, and to A&E, and they couldn’t really understand what was wrong with her.’
After a continued and swift decline, they insisted on further tests, which revealed that Sonia had leukaemia, the very same disease that her mother, Bonita, passed away from a year before.
‘When we got the diagnosis, I saw the look of horror on Sonia’s face. The doctor asked if we knew anything about leukaemia and we said we had watched her mum die from it only a year ago. The condition isn’t hereditary so it was one in a million that Sonia would have it too.’
As Sonia’s leukaemia was so aggressive, she started chemotherapy straight away but was told her best chance of survival was a stem cell transplant from a stranger. Because Sonia was mixed race her chances of finding a match was drastically reduced, because many ethnicities are under-represented on the donor registries.
Against the odds, a donor was found in Taiwan for Sonia and she underwent a transplant on 26th April 2013. Although the transplant was an initial success, Sonia’s condition took a turn for the worse and she died in Toby’s arms on 3rd July 2013.
Toby's courageous ride in memory of Sonia
Toby is now raising funds for three charities which helped Sonia before she passed away and supported Toby over the past two years. Anthony Nolan is a blood cancer charity and the UK’s bone marrow register, ACLT is a charity which aims to increase the number of people from ethnic minorities on the UK bone marrow and blood donation registers and Bpositive aims to provide support and information and for patients with acute leukaemia.
Toby says, ‘While Sonia and I always tried to make the most of any opportunities life presented to us, losing Sonia has only solidified my view that life really is short and we don’t know what’s round the corner, so as much as possible, we should try and do things we enjoy and make the most of our time. She’ll be with me in mind and body while I ride, and I know she would love the fact that I’ve decided to undertake this challenge in her memory, and for such good causes.’
'We can't thank Toby enough'
Catherine Miles, Fundraising Director at Anthony Nolan, says, ‘We can’t thank Toby enough for undertaking such a momentous challenge in loving memory of Sonia.
‘The funds Toby will raise will enable ourselves and ACLT to recruit potential bone marrow donors for people like Sonia to the Anthony Nolan register – any one of whom could be a match for someone with blood cancer.’
Beverley De-Gale, ACLT co-founder & Director of Operations at ACLT, says ‘For Sonia and Toby to have lost Sonia’s mother was truly sad. For Toby to watch his beloved Sonia pass away from the same illness which took her mother 12 months prior is just devastating.’
ACLT are truly grateful to Toby for undertaking this challenge in memory of Sonia. We admire his strength and courage and we wish him all the best in the lead up and on the day.’
Photo courtesy of Alex Griffiths
How you can take part
If you want to take on a cycling challenge like Toby then the Great Tour is the one for you; an incredible cycling event along the entire British coastline, split into 64 one day stages from July till September - you can choose how many stages you take part in. Full details and how to register for ‘Team Anthony Nolan’ is on the Great Tour website at www.thegreattour.co.uk