News - 17th November 2017

The road to acceptance

DanielsVoyage

My son Daniel was born with a condition called Sotos syndrome which is a rare genetic disorder. It causes Daniel to have overgrowth severe intellectual disability, visual impairment, and sensory processing disorder, severe epilepsy, feeding difficulties and challenging behaviour. Daniel is also incontinent and nonverbal.

 

The early years were very tough coming to terms with it all. I was finding it very hard to cope. I started to run to help with all the stress and anxiety I was suffering with. I started to do parkrun. I loved the great sense of community and it’s a great way to meet people. Through all the hospital appointments and therapies I was desperately trying to find something positive I could do with Daniel. I had to get a larger buggy which I had to get in from England; it was a jogger type one. I was out with Daniel one day and I decided to try to run with it to see if he liked it. Daniel absolutely loved it.

 

This is where our journey began. I registered Daniel for parkrun and I cried when I saw the name on the barcode. I emailed the Tymon parkrun core team to let them know that we would be coming down this was back in February 2015 and the first run we called ‘Share the love’. It was Valentine’s weekend and Daniel gave everyone love hearts after the run. This was the first time I introduced Daniel to our parkrun community. It was wonderful – everyone came over to say hello to him and when we were running everyone shouting to him “go Dan”. The best bit though was the scanning of his barcode and his name up on the results. It was like having his name up in lights.

 

“I registered Daniel for parkrun and I cried when I saw his name on the barcode”

 

We are regular runners at Tymon parkrun and over the past two years we have received amazing support from all involved in Tymon Park. They have helped share our story “Daniel’s Voyage” this year and when it was his 10th birthday they had a party for him. They made a gorgeous cake. It meant so much as every year we struggle as to what to do for his birthday due to his disability. It was so special to celebrate it somewhere Daniel loves to go.

 

The support this year has been huge as we are fundraising to adapt our home to give Daniel a better quality of life and we were taking on a huge challenge pushing Daniel in the Dublin City Marathon. They helped share our story and encouraged us all the way. We can’t thank the Tymon parkrun community enough for what they have done for our family.

 

For Daniel, the parkrun has given him an identity. It has embraced inclusion and enhanced Daniel’s quality of life. Overall it has helped me on the road to acceptance in having a child with a disability and it is one of my favourite places to run with Daniel.

 

Sinead Tighe
parkrunner A556968

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