Jo and Alice are CASK Research ambassadors
Jo is the mother of twenty-two year old Alice who has a CASK gene mutation. Alice recently made the news by being the fastest ever assisted runner in the London Marathon. Jo is a single mother of two and, since Alice finished school, they spend their days “having fun together”. Jo herself suffers from a degenerative disease and five years ago was having back issues as a result of her medical condition. In addition, Alice had been in and out of hospital during much of the previous two years and had lost precious skills. “I needed to do something that would keep me fit so I could keep lifting Alice”, explained Jo. The gym was not an option due to childcare complexities so Jo thought she’d give running a go. Being previously fit and healthy following a career as a dance teacher, Jo hadn’t done any real fitness since the age of thirty.
Finding a passion
Jo remembers the first run they went on well. She quickly discovered “You can’t run pushing a wheelchair”. However, she was determined to give it a second go and dug out an old buggy and tried again. This time it worked and Alice absolutely loved it. Once it was obvious that Alice was happy with the running, Jo invested in a Delichon Delta, which is an All-Terrain three wheel special needs buggy. They have since upgraded to one with specialist running wheels.
Their journey to marathon stardom started the same way many runners start out – by following a couch to 5k training programme. Alice was 17 at this point and they were due to go on a Disney cruise. During the cruise there was an opportunity to run in a 5k race on Castaway Cay, and Jo was keen to be race fit for this. So, with this motivation, Jo started taking Alice to their local Park Runs. It turned out that they were naturals at races and surpassed their goal of 5km long before their Disney holiday.
Seeing that Alice absolutely loved being pushed in her wheelchair during a race Jo looked around for more races but quickly realised that 5km races were few and far between. If they were going to continue their new hobby of racing it was clear that Jo would have to learn to run further than 5km. Alice and Jo now enter a race at least once a month, sometimes three, and drive up and down the country to find them and pursue their joint hobby.
An inclusive hobby
When asked why Jo fell in love with racing, she answered “It’s something Alice can do just the same as everybody else, just in a different way. She is included just like everyone else it. Everyone seems to know Alice. Alice just loves it and she loves being outside”.
Alice learnt to walk at age four, but she never walked with a natural gait and struggled walking outside. When Alice was ten she went on holiday with her family to Florida. Overnight she lost the ability to walk. It is still not known what caused this sudden change, but Jo thinks it could have been due to a seizure that they weren’t aware of. She’d suddenly lost all her balance and even needed extra supports in her chair. Alice did learn to walk again but this skill has once more been lost in the past year. Now Alice has no balance and can’t even stand unsupported.
Before 2022 the London Marathon had never allowed assisted runners in the race but in 2022 they opened a ballot that assisted runners had to apply for. Jo duly applied and waited with baited breath but it was only five weeks before the race that Jo and Alice finally got confirmation that they had been successful. Training for a marathon is one thing, but navigating the process of getting to the start line in a busy capital city with a twenty-two year old who is in a wheelchair and comes with a lot of associated bags is another thing. Jo drove Alice to London on the Friday and drove straight to the Excel Centre where they had to pick up their numbers. She then drove back across London to their hotel. The hotel had been chosen especially by Jo since it had its own carpark, which is incredibly rare in central London. Out of the thirty places in the carpark, when Jo drove in, one space was available, and it fortunately happened to be a disabled space.
The next morning Jo pushed Alice the twenty five minutes to the race start at the crack of dawn to do an interview for the BBC. Rather than being worried about the actual race, Jo was more concerned about how they would get back to their hotel once it was over. Jo had spent hours researching which trains they could get that were wheelchair accessible. The majority of the London Underground is simply not accessible for families like Jo’s and a journey that could take a physically able person thirty minutes could take hours for someone unable to go the direct route. Fortunately, at the end of the race, WellChild, the charity Jo had run for, hailed her and paid for a black cab with drove them straight back to the hotel.
Marathon history makers
Alice and Jo were the fastest assisted runners in the London Marathon, and as a result, made history! Following this successful trial of admitting assisted runners into the world famous marathon, the London Marathon have just confirmed that they will now accept applications from duos like Alice and Jo every year.
Running races with her daughter Alice has clearly given her so much more than just fitness. She has made life-long friends and enjoyment for her and Alice. “You just have to find those things that you can do. That work for you.” Jo has certainly done just that and inspired families along the way!
Jo and Alice raised £1000 for WellChild – the national charity for sick children.
Jo is a member of the WellChild Family Tree. The WellChild Family Tree is a growing network of families from across the UK, all of whom have children with serious and complex health needs. It enables parents to connect with others who ‘get it’ for mutual support, advice and friendship. Jo received invaluable support and advice from them during lockdown. WellChild sent out PPE and ensured Jo had up-to-date information on shielding. Her and Alice have also enjoyed sailing trips and other activities provided by WellChild. For more information on this charity see https://wellchild.org.uk/