He had just been rushed in an ambulance from Limerick to Our Lady’s Children’s Hospital, Crumlin, with a collapsed lung. An hour later he was in theatre but his smile is so wide you would think it was taken on Christmas morning after Santa had been.
Evan’s first anniversary was on Sunday. He was just two years and three months old. It was cancer.
The brave boy from Newport may be gone from his loving family but his legacy lives on. His parents, Paddy and Marisa, and baby brother, Ben, presented a cheque for €33,285 to St John’s Oncology Ward in Crumlin. The money was raised from a fun run / walk in memory of Evan last October
Paddy says the photo tells the story of his son.
“He has lost his hair but he is still smiling. It is a little over two weeks before he passed away but you can see how well he looks. It turned out he had a collapsed lung and sirens of the ambulance were going all the way from Limerick to Crumlin.
“When the oncologist came rushing into his room he was sitting up in the bed smiling. The photo taken then tells the story of his courage. You would never have thought there was anything wrong with him. He was just so brave. He smiled the whole way through it,” said Paddy.
People told him and Marisa that they were inspired by Evan.
“People that never met him felt they knew him and identified with him. They were following his story. I think he really resonated with and inspired a lot of people,” said Paddy.
In July 2016, they noticed a droopy eyelid and wheezy chest in Evan. They went to the doctor who sent them to UHL. From there it was Crumlin where they spent the next 10 weeks.
Less than a year later Evan was laid to rest.
“It is your worst nightmare. You never think it is going to happen to you. The scary thing is, there is a perception it is rare but there are four children every week in Ireland diagnosed with cancer. Every year 180 to 200 children are diagnosed with cancer – of those 20 to 30 children are dying,” said Paddy.
Evan’s anniversary was marked with a Mass in Newport on Sunday.
“We wanted to commemorate it in a positive way instead of a sad day. There are times it is tough but overall we’re doing ok. There are definitely tough times. We’re getting through it. It is just a process you have to get through.
“At moments it is very difficult and there are days you feel you are doing good. It’s up and downs,” said Paddy, who describes their 18-month-old son Ben as “a ray of light”.
“He is flying it. Evan loved him and was very good to him. He doted on him,” said Paddy.
The couple and their giant team of between 30 and 40 are already planning this October’s Evan Jones memorial fun run / walk in Newport. Last Halloween, between 1,300 and 1,400 took part.
“It is a huge amount of money. One thing that is very important to us is that funds raised go to frontline care in the oncology ward and not tied up elsewhere. It will go directly to the care of children on the ward.
“We spent 10 weeks pretty much living there. You get to see the staff day to day – they know much better than anyone what is needed. You couldn’t praise them enough. The care Evan got was incredible.
“They are amazing people devoted to what they do,” said Paddy, who wished to thank, from him and Marisa, the Team Evan Jones fundraising team for all their hours of work.
“It just wouldn’t happen without them. It is such a huge undertaking. The support we have received from Newport, surrounding communities and as far away as Ballydangan, where Marisa is from, has been incredible,” said Paddy.