Parents of boy with Escobar syndrome run to raise awareness

Sharon and Denis Myers spend almost every second weekend taking part in charity runs with their son, Noah — just to raise awareness about inclusion.

Noah, 4, has Escobar syndrome, a rare congenital disorder that affects his joints. He also has scoliosis and respiratory problems.

There are only around 100 confirmed cases of Escobar syndrome in the world.

Despite having ongoing medical needs, Noah can expect to live a full and normal life.

Escobar syndrome is passed on by an autosomal recessive pattern, which means both parents must carry the mutated gene.

Noah’s older sister, Sophie, 10, does not have Escobar syndrome — there is a one in four chance of it being passed on by the parents.

“When I was 12 weeks pregnant with Noah, we knew there was something wrong because Ecobar reduces foetal movement,” said Sharon.

She underwent a barrage of tests but the medical experts could not figure out what was wrong because Noah seemed to be developing normally.

Sharon and Denis thought they were out of the woods but it was obvious when Noah was born that something was wrong — he was eventually diagnosed nine months later.

“Noah is disabled and will have life challenges, but I want him to be treated as a normal little boy. I want him to feel that he is, in most ways, the same as everyone else,” said Sharon.

“I want him to know he is disabled but I don’t want it to get in the way of him living the fullest life possible.”

The couple take Noah with them on charity runs around the country to raise awareness about inclusion.

They intend running with him in his adapted wheelchair in the Irish Examiner Cork City Marathon in June.

“It’s not about raising funds for Noah or for his disorder. We just want to raise awareness about inclusion,” said Sharon.

“There are over 600,000 people living with disability in Ireland and Noah is one of them. We want Noah to see that nothing is impossible; that he can do whatever he wants to, with a bit of determination.

“Noah is a very bright and energetic child and incredibly happy. He knows he is different to other children and often asks us if he will be able to walk when he is older. He thinks when he is older he will be.”

Noah, who loves computer games, is in junior infants and is enjoying learning to read and write as much as playing his games.

“Denis has had to learn to talk and run at the same time when he takes Noah on a run — he never stops asking questions,” said Sharon.

Sharon said they did not want people to see the daily struggles about living with a child with disabilities.

“The first years with Noah were tough but we coped as a family,” she said. “There were tears but there were also moments of great joy — Noah is a real trouper.

“We want people to see that Ireland can be a country where people like my son can feel they are involved in every part of society from they day they are born.

“Hopefully, by the time Noah grows up inclusion will be the norm in every aspect of his life, be it accessibility or activities.”

Those wanting to follow Noah’s life journey can follow him on Facebook: https://www.facebook.com/groups/1265630633450884/