“As for most people, the past 12 months has been difficult and challenging on many levels.
“Having a child with a life-limiting condition means you are always caught up somewhere between protecting and shielding them from risk and harm the best you can while also trying to enable them to have the best life experiences.
“Covid-19 challenged both those all in one go in 2020. Not only were we faced with the risk of a serious respiratory infection but also, overnight Elain could not do most of the activities and life enhancing things that gave her a rich and fulfilling life.
“Elain's disability also means that she struggles to process and understand change. The first few months of lockdown when she couldn't attend school, couldn't go to swimming, dancing or soft play were really difficult for us to explain. Even simple things like going to a shop or cafe, she simply did not understand why she couldn't do those things any more.
“The more positive element of lockdown was that we got to spend much more time together as a family.
“We are lucky as we live in a very rural village in Wales so daily walks were still possible. We scheduled our days to mimic school, adding in a timetable on the wall which detailed all the day's activities so Elain could have a structure.
“At the beginning of the pandemic, we were incredibly concerned about how Covid-19 might affect Elain if she was to become infected. We followed Government guidelines and shielded her for many months. As time went on however and we saw more and more cases of children catching the virus and coping well, the stress and worry eased a little. In September 2020 Elain was able to stop shielding and return to her bubble in school. This really helped us return to some kind of normality again.
“The Marathon in May challenge in 2020 was a great way for us to focus our energy on something positive and active to get through another month of lockdown.
“Elain was gifted a brand-new all-terrain buggy early on in the pandemic. Having this new mode of transport for her meant that we now had many more options of where we could walk and run!
“It seemed fitting to combine her new wheels with a public facing challenge via her appeal 'ApêlElain'. We set ourselves the target of covering 26.2 miles over the month in the buggy. The combined weight of Elain and the buggy was around 65kgs so this was no easy task! We also had to contend with changing weather which varied from torrential rain to 27+ degree heat!
“Elain was also only with us for half the time so the reality was that we had to go out every single day to get the miles in. The last week was difficult, it was scorching weather and Elain often favoured staying in the paddling pool rather than going for a run or a walk!
“The amazing thing about completing the challenge in 2020 was the incredible level of support we had from the local community. Over 50 people signed up for Team ApêlElain and together we raised in excess of £7,000 which we were delighted with!
“My tips and advice to anyone participating in the challenge this year is to get yourself organised! Plan out your month, set up your fundraising page and blog about your journey.
“Give your sponsors and supporters regular updates on your progress and also make sure you share the wonderful work of the hospice so that people can see exactly where their money goes.
“Make the most of social media streams, share live videos on Instagram and Facebook, share hashtags and tag Tŷ Hafan into your posts. Share photos and updates on your runs, steps and walks and title your activities as Marathon in May on Strava, Map my Run or whatever fitness app you use.
“Finally, don't forget to share on the days where you are struggling. You might just get
that one comment or one donation that spurs you on to keep going!”