When Sinéad Taigh first started running, little did she know it would become a way of connecting her son Daniel to the wider world. But in the years since their first jog around Tymon Park, running has brought Daniel friendship, identity, and joy and given Sinéad strength when life has demanded everything of her.
“Dan was born in 2007,” she begins. “He was diagnosed just a few weeks after birth with global developmental delay and no sight at six weeks old. Our journey began there with lots of tests and appointments to find out what he actually had. He was 10 months old when he was diagnosed with Sotos syndrome.”
Sotos syndrome causes overgrowth, severe intellectual disability, cortical visual impairment, sensory processing disorder, epilepsy and aspiration of fluids. “He is incontinent, non-verbal and has behaviours that challenge. The first few years were extremely hard trying to get a handle on it all and navigating the hospital and disability services. I knew from early on that I would have to fight and advocate for all that Daniel deserved.”
As Daniel grew, the challenges grew with him. “He quickly grew out of the standard buggies so we had to look for a special needs one. The HSE had one but it wasn’t easy to push and hard to get out on longer walks which both Dan and I loved. I looked for one and found one in America and then found a supplier in England that did one.”
Around this time, Sinéad had to give up work due to the care Daniel needed. “I was also seeing my doctor due to the anxiety I was feeling about my situation. His prescription to me was to run. I started and I could really feel the benefits. The buggy I had gotten was a jogger buggy so one day I was out walking I decided to jog with it to see did he like it and he absolutely loved it. This is where it all began.”
From then on, running became their shared language. “We were running regularly throughout the week. I had already started doing parkruns in Marley Park, then one nearer to home started at Tymon Park so I approached the organisers and asked could I run with Daniel. They said no problem and told me to sign Daniel up for a barcode. It was Valentine’s Day on the Saturday we did the first parkrun so I decided we would share the love and we brought down love heart sweets for everyone. It was so special, everyone welcomed us and the best thing was looking at the results after the run and seeing Daniel’s name. It was like having his name in lights, he now had an identity. From here on in things just got better.”
That sense of identity is something Sinéad returns to again and again. “Firstly it has given Daniel an identity. Everyone knows him and calls out his name when we run our parkruns or races. Daniel loves to clap hands and make vocal sounds so as people get to know him and feel more comfortable they clap his hands and also make the vocal sounds back to him. This allows Dan to be fully understood and creates a connection with people. It also helps with his sensory issues when running, the breeze in his face calms him and can regulate his behaviour.”
Every Saturday, Daniel celebrates being part of something bigger. “Daniel loves being outdoors and he celebrates all his birthdays at our local parkrun. To hear over a hundred people singing happy birthday is amazing.”
For the Taigh family, running has broken barriers. “For us as a family it has broken down the stigma of having a child with complex needs. It has become a safe place for us. It’s not easy to get out socially with Daniel so having the running community support us has helped us overcome many challenges. We can do something as a family and we feel so included, have made many friends, as caring for a child with disability can be a lonely one.”
Strength through Community
Every event has meaning. “It’s very hard to pick one as they are all special. The Dublin Marathon has the best support so we love doing this as the whole 42km is about Daniel and assisting him getting the medal is just so special. The whole team behind the event are there to help us from the start to the finish. Every race we do we meet the best of people and they just want to help us. The Tallaght AC 5km would be up there at the top as this is where we live so we just feel so proud to be part of it.”
Sinéad and Daniel have found a deep connection through their club too. “I’m part of Brothers Pearse AC and Daniel is an honorary member. This club has been with us since we started running. They support us 100%. In 2017 we had a fundraising campaign to raise funds to adapt our home and our community of Tallaght and the running community around us held fundraising events to help us. Our running rig was donated to us by Lord Traveners and we have great link with Hoyt running chairs. They are always on hand to help us out. They are our friends, sometimes a lifeline to us through the darkest days. They help us give Dan his best life and always have his back which is the important thing.”
Training for a marathon is never easy, but for Sinéad, it requires even more balance. “It is much the same as if doing it on your own, the difference for us is that we are caring for Daniel so getting the much needed sleep is often quite hard. I back up the running training with strength and conditioning and I’m lucky to be one of the sponsored athletes of Westpark Gym in Tallaght, they have been sponsoring me since 2017. I do three to four days per week and then five to six days running. When we started we used to do all the training with Daniel in the running week but have learnt that we don’t need to do this, just make sure we get the miles in, but the strength training is so important now as Dan weighs 71kg.”
“Nutritional is vital so we have to keep on top of this, again can be hard when caring for Dan. I get regular massages to help not only with the training but also with all the lifting and moving we do with Dan. I have now started to do a lot of post long run recovery by using plunge pools and sauna.”
Finding Their Voice
Running, for Sinéad, became more than exercise, it became therapy. “This has been the most important piece for me as carer. I went to my doctor in the early years and as we chatted we established that my life was going to change but only get harder and that a tablet wouldn’t fix my anxiety. He asked if I would run so I gave it a try and 13 years later I’m still doing it. It has helped release the stress of all the fighting and advocating for Dan. I would go out on a run with my head filled with all the problems and by the time I come back I would have worked them out, been able to write the emails or just feel calmer.”
“It has also helped with the loneliness, it gave me the chance to be with people, talk for a little while and get a lot of support from them. It also gave me back an identity outside my caring role where I could just be myself for a while.”
Her message to other families is one of encouragement. “If it is something they would like to try I would encourage them to do it. You definitely need a community around you when raising a child with a disability, not just for them but the whole family. It will give you a sense of belonging and not to be alone. I can see more families doing it now since we started and we are all there to help one another overcome the challenges of caring for a child with a disability.”
“We offer support not only about running but sometimes the other problems we have when advocating for our children.”
And that sense of giving back continues to grow. “After we were supported by our community with our fundraising campaign Daniel now fundraises to help others. We have a Facebook and Instagram page called Daniel’s Voyage to share all the happy moments with Daniel and his achievements. We have set up an inclusive parkrun at our local parkrun in Tymon Park where we loan out buggies to other families to try out and use for races. We helped out Colin Farrell last year with a buggy so he could push the lovely Emma in the Dublin Marathon.”
“Our biggest achievement is that Daniel is known in our community and he has been embraced by the running community, he has so many friends and supporters. That’s all we could wish for.”
Follow Daniel’s story and support the family’s inclusive running projects at:
👉 Instagram: @daniels_voyage
👉 Facebook: Daniel’s Voyage