Rare Disease Day: Danny won't let his condition stop him laughing

Sun, 27 Feb, 2022 - 20:30

Niamh Griffin

To his mother, Danny Molloy is an absolute character who just wants to mess and laugh while chasing his parents or little sister around.

The seven-year-old Tipperary native does not speak and uses Lamh sign language to communicate. Since getting a new communications device two weeks ago, the family has been in stiches at his jokes.

He needs that device because he is one of 300,000 people living with rare conditions in Ireland who are on Monday marking Rare Disease Day.

In and out of hospitals since he was born in Clonmel, he was diagnosed early with two conditions. However, less than one year ago, diagnosis of a third disease completely changed his life, his mother Carol said.

They were told he had truncus arteriosus soon after birth, meaning his heart had only one blood vessel instead of two.

“He had open heart surgery at four days old, he was tiny,” said Carol. He spent the first months of his life in intensive care in Children's Health Ireland (CHI) at Crumlin.

Diagnosis

He was later diagnosed with microcephaly which affects brain growth, leaving him with intellectual disabilities. Despite what Carol describes as excellent care, the little boy was frequently ill, needing open heart surgery again in August 2020.

“I was pregnant then,” she said. “Danny had fallen sick again on the day I was due. We were rushed up to hospital in an ambulance. I came home and had Willow by emergency c-section, I had to leave her here with my sister and go to Dublin.”

Her husband Dermot brought Willow to Dublin and they stayed there until Danny could go home, even though, because of Covid visiting restrictions, they could only see him one at a time.

Then, last May, the immunology team at CHI at Crumlin put him on a trial with treatment for an auto-inflammatory disease.

“This has completely changed our lives. His body attacks the healthy tissue by mistake, and it causes intense episodes of high fevers, headaches, joint pains, swelling, so the medication has worked for this,” she said.

We used to have to bring him to hospital every time he got sick, now he can be treated at home and it stops it in its tracks. It is unbelievable.”

This long journey toward diagnosis is typical for many families between the challenges in identifying many rare conditions and the pressures on paediatric services in Ireland.

Support from the local community in Drangan was really important, she said, as was advocacy group Rare Ireland.

“I don’t know what I would have done the last few years without it, I’m in the group since Danny was very small,” she said.

Laura Egan, founder of Rare Ireland, said: “Receiving a rare diagnosis for your child can be a daunting, isolating time but there is support.”

She set up the group when her daughter was diagnosed with a rare condition, and they now have about 30,000 members.

The Rock of Cashel is one of many locations lighting up on Monday night for Rare Disease Day during events organised by Rare Ireland or Rare Diseases Ireland.

“We want to break the feelings of isolation and loneliness felt by many, and unite as a big family, supporting and helping one another,” said Vicky McGrath, chief executive of Rare Diseases Ireland.