A Limavady couple have spoken of their amazing son and his fight for life in an effort to raise awareness, and to give hope to other parents whose children are battling illness.
Moira McDermott and Darron McMichael have spent most of the last eight months by their son’s bedside at the Royal Belfast Hospital for Sick Children.
Their son Jonah born on October 10, 2014, has Down’s syndrome. He was born with a rare breathing disorder, called Tracheomalacia which caused his trachea to collapse in response to the slightest movement. As soon as Jonah was born, he was ventilated and a feeding tube inserted.
The infant became very ill.
“He really struggled for the first six months,” says Moira, “and I remember it really hit me and thinking, ‘this wee boy is really sick’. He wasn’t gaining weight because he was using all his energy to breathe. I was always thinking there was a simple answer .”
Jonah had a tracheostomy - a surgical opening in the throat to allow a tube to be inserted into the windpipe - and Moira and Darron says it has made a world of difference.
Jonah has been in a stable condition for the last month, he is gaining weight, his blonde hair is getting thicker, and he’s teething, “just any other normal baby,” says Moira.
“They’re all small steps bringing him closer to coming home,” says Moira, who says even before her son was delivered she knew he was strong. As Darron says: “He’s the main man.”
Jonah will soon move out of intensive care, and into another ward. The couple say his stable condition means they can start planning to bring their son home. In preparation for that, after a period of care at Altnagelvin hospital, Moira and Darron are being trained in every aspect of Jonah’s care.
Jonah will have a carer, but Moira or Darron will have to be with their son at all times.
The couple are making the most of the many special moments they share with Jonah, like on May 18th when he smiled for the first time.
“His eyes just lit up and the smile came,” says Moira. “It was precious. We waited a long time for that.”
Darron says while their son’s diagnosis that he had Down’s syndrome was difficult, the couple see their son as any parent sees their child. They know Jonah has a long road ahead of him, and that his speech and physical development will be delayed because of his low muscle tone, but they are confident of a bright future for their remarkable son.
“He’ll be teaching us a thing or two,” says Darron, beaming with pride.
The couple want to thank everyone involved in Jonah’s medical care, including staff at Royal Belfast Hospital for Sick Children and at Altnagelvin hospital.
They also praise their families and friends, and Darron’s employer, Tayto. They say without their support they don’t know how they would have survived the last eight months.
One example of such support is a fundraising night at Limavady Rugby Club on June 27th organised by Darron’s brother, Clive McMichael; Moira’s sister Fiona McDermott and the couple’s friend Steven Reilly. They are overwhelmed by such kindness and hope people will join them in celebrating Jonah being so stable.
The fundraiser starts at 9pm with a £5 per head disco.