DJ/Producer/Music PR supremo Sonia Akow was diagnosed with leukaemia almost a year to the day after her mother died from the same condition, and subsequently lost her own battle against the disease.
‘Soulmates’ and DJ duo Sonia and Toby had been together since they were teenagers and travelled the world together, playing gigs across four continents.
A year after Toby had to make the heartbreaking decision to turn off Sonia’s life support, he has cycled 400 miles in four days to Paris and on August 10th he will cycle around their home city of London in the Prudential RideLondon-Surrey 100 in her memory for blood cancer charity Anthony Nolan.
A two decade love story
A love story that spanned over two decades was struck by tragedy last summer, on the 3rd July 2013, when Toby Edwards lost his ‘best friend, soulmate and other half’ Sonia Akow to leukaemia. Tragically, this was not the first time the family had been hit by the disease because only one year before Sonia was diagnosed, almost to the day, Sonia's mum had lost her battle with leukaemia after fighting for 14 months. According to Toby, It was a ‘million-to-one’ chance that his partner of 21 years had the same illness as her mum as it’s not a hereditary disease.
Toby said, ‘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.’
‘An instant connection’
The couple’s adventure together began in a London pub. Toby moved to London from Wigan when he was 19 years old to attend the City and Guilds of London Art School. There, on a Friday night after college, he met a young Sonia Akow in the local pub.
‘We just started talking and had an instant connection. We realised we had the same record collection and obviously we liked the look of each other! I kissed her outside the tube station as we said goodbye and then literally floated home. That was the beginning of our 21 year adventure.’
It was that instant connection and their shared love of music that went on to shape their life together as the couple went on to become successful DJs and producers.
‘At college we taught ourselves to DJ. We loved music and just thought ‘we could do this’. Back then, you had to be in it for the love of it because you had to buy everything – not just on a laptop like now. We bought ourselves decks and started out putting on our own nights in venues in Soho and Covent Garden.’
Thanks to an inspired moment from Toby’s dad, Sonia and Toby performed under the name of ‘SOTO’ - a combination of their names.
‘We bought round-the-world tickets several years in a row, playing gigs up in the mountains and down on beaches’
Their careers took off and they ended up travelling the world together as SOTO. The duo played a diverse range of gigs from America to Hawaii to the mountains in Whistler to Bondi Beach on Boxing Day, via Malaysia and New Zealand and anywhere and everywhere in between.
‘’For a few years in a row we bought round the world tickets and we were away for 3 or 4 months, it was brilliant to do that together, and while we worked hard to make the best of every opportunity we felt so lucky and privileged to be able to explore the world together. We had a lot of fun, we saw the world and met some amazing people, we made the most of opportunities presented to us. That’s what life should be about.’
After over a decade of DJing, the couple made a decision to move to the next chapter in their lives (‘people stopped buying actual records and started downloaded MP3s from a thing called ‘the internet!’), We decided we’d like to buy a house and plan for the future and possibly a family. Sonia went on to manage a record label and Toby joined an advertising agency but they still kept DJing and producing in their spare time.
‘We always did everything together, we were best friends, we grew up together. Our shared experience glued us together as a couple.’
My best friend, my soul mate and literally 'other half’
The couple’s dream was to buy a ‘wreck of a house with character’, do it up and have a little family. The week they exchanged keys on a house, Sonia’s mum arrived in England with some news that would change everything. She had been diagnosed with leukaemia. In November 2011, after battling for 14 months, Sonia’s mum sadly passed away.
‘It was a really tough time. We had a year of going to work, going to hospital and coming back to a shell of a house, that needing a lot of work to turn into a home.’
‘Trying to support Sonia through the grief process was hard, but you do everything you can to be there for the person you love more than anything else in the world. Eventually we got our plans back on track, did more work on the house and it was finally liveable. We got the two kittens that Sonia and I always wanted and started to go on holidays, and try for a family.’
It was on one of these holidays that they noticed something wasn’t quite right with Sonia.
‘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.’
‘We knew something wasn’t right with Sonia’
Sonia’s condition worsened and so when they returned from holiday they went to see their doctor. In the first visit, the doctor initially just said rest for a few days, take some paracetamol and see what happened. Sonia rested, but she still did not feel better.
‘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 final visit to the doctor where we insisted on blood tests and more investigation, Sonia was sent to an acute medical unit for tests. That night, November 16th 2012, a doctor diagnosed Sonia with leukaemia. This process from getting tired to being diagnosed with blood cancer only took about 4 weeks.’
‘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.’
‘That night we found ourselves in the same ward in the same hospital that we had been in with Sonia’s mum.’
Sonia with her mum and dad
The next day, because the leukaemia was so aggressive, Sonia started chemotherapy. She went on to have three cycles of intense chemo, and 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 all odds, Anthony Nolan found a match in Taiwan’
During this time, with the help of friends and family, Toby went on to raise awareness of the Anthony Nolan register and the African Caribbean Leukaemia Trust organising awareness events, donor and fundraising drives.
‘Anthony Nolan talks to other countries who have registers to try and find matches for people from all over the world. Against all odds, they found match for Sonia in Taiwan, and arranged for the healthy donor's stem cells to be collected and transported to the UK to try and save her life.’
Although the transplant was an initial success, Sonia’s condition took a turn for the worse.
‘She died while I held her in my arms’
‘She had to go into intensive care, where they are understandably strict about visiting times, and so one evening I left at 7pm. I was asked to leave so the amazing doctors and nurses could do all they could to make Sonia better. That evening we looked into each other’s eyes and told each other we loved each other, and that was the last time we spoke. Very soon after that Sonia had to be sedated, and she spent her last days in an induced coma state.
‘Initially, I refused to listen to the doctors as the odds of her survival sounded relatively good after the minimal odds of finding a match for a stem cell transplant.’
‘I couldn’t contemplate that she wouldn’t pull through, she was young and healthy, so why wouldn’t she? Then one night Sonia had a massive stroke, caused by the complications, and the doctors told me her condition was ‘not compatible with normal life’.
I had to make the decision to essentially turn her off – not a decision anyone wants to make. Sonia and I had discussed that if either of us were ever in that position we should not prolong the situation for either of our sakes, and just let us go. She died while I held her in my arms, surrounded by family and all our close friends.’
A year on, cycling through the grief to save lives
A year after Sonia’s passing, Toby took on challenges to raise funds and awareness for Anthony Nolan to help others dealing with blood cancer. Toby rode from London to Paris over three days, and battled the difficult conditions (thanks to the remnants of Hurricane Bertha) to finish the 2014 Prudential RideLondon-Surrey 100 mile cycle race on August 10th.
‘I'm riding my bike to raise money and awareness for a cause that helps people who suddenly find themselves in the most devastating situation imaginable and that also actively tries to increase the numbers of donors on the register. Thanks to Anthony Nolan’s lifesaving work, if your loved ones were suddenly struck down with blood cancer, they have a better chance of finding a donor.
‘I miss Sonia every day, but her vibrancy and positivity are always with me, and they are what drive me to keep going and want to do good things like this!’
‘I’ve loved riding my bike ever since I was a kid, I love the freedom of cycling and it has really helped me through the grieving process. The act of getting on a bike and pushing myself makes me feel better. Looking after my body helps look after my mind too and it gets me through the bad days.’
You can sponsor Toby at https://www.justgiving.com/toby-edwards/