Community rally around 'superhero' five-year-old with incurable disease

Over the next several weeks, many people will walk, run, and cycle for Darragh Ryan, who suffers from a rare, incurable disease
Community rally around 'superhero' five-year-old with incurable disease

Jenny McCully Ryan and son Darragh Ryan, 5, at home in Monard, Tipperary. Picture: Brian Arthur

In February of last year, Darragh Ryan was a healthy, happy and fun-loving four-year-old who loved Spiderman and playing with his toy cars.

Then out of nowhere, the seizures began.

“He’d just fall,” his mother Jenny said.

“The first night he fell, we just thought he was sleepwalking... then he fell again.” 

On February 10, the Tipperary family headed to Clonmel hospital, where they diagnosed and treated Darragh for epilepsy.

“But no medication, nothing, was working.” 

“Darragh didn't know what was going on, he kept thinking there was something wrong with his eyes and he kept saying ‘I have to get out of here’.

"He was really scared.” 

Ms McCully Ryan and her husband Jamie then brought their son to Cork University Hospital.

“He was like a guinea pig down there. They tried everything on him. Still nothing was working. 

“Then he couldn't walk, he couldn't talk, he stopped eating.” 

It was a terrifying time for Darragh’s parents and his two siblings, Kian,13, and Keeley, 10.

 Kian Ryan, 13, Jenny McCully Ryan, Darragh Ryan, 5, Jamie Ryan and Keely Ryan, 10, at home in Monard, Tipperary. Picture: Brian Arthur
Kian Ryan, 13, Jenny McCully Ryan, Darragh Ryan, 5, Jamie Ryan and Keely Ryan, 10, at home in Monard, Tipperary. Picture: Brian Arthur

In a last-ditch effort to find the root cause of Darragh’s seizures, he was brought to Temple Street Children's Hospital in Dublin in March of last year.

At just four years of age, he bravely underwent numerous scans, EEGs, lumbar punctures, and had a plasmapheresis. Eventually, a muscle biopsy was ordered and further testing carried out in the UK.

“He was dying,” his mother said, “The colour was gone.” 

“I just asked can we go home. I didn't want him to die in the hospital.” 

Darragh was transported home from Temple Street in an ambulance to pass away at home.

But, more than a year later, Darragh is still fighting on.

“He came home and we slowly started taking him off the medication, and gradually... I won't say he was alert for the first few weeks, but he could hear noises, he knew where he was,” Ms McCully Ryan said. 

“A couple of weeks after that, he would get a little smirk here and there. Now he laughs sometimes. He is aware.” 

The results eventually came back from the UK with the answers sought by his family and doctors. Darragh was diagnosed with mitochondrial complex 1 deficiency disease, a rare disease with no cure.

People with the disease typically have neurological problems, such as abnormal brain function, recurrent seizures, intellectual disability, difficulty co-ordinating movements, and/or involuntary movements.

However, no two people diagnosed with the disease experience the same symptoms and life expectancy also differs from patient to patient.

Ms McCully Ryan is now Darragh’s primary carer, having given up her career as a self-employed hairdresser to provide care for her son, who is now bound to his wheelchair buggy.

Over the next several weeks, many people will walk, run and cycle for 'superhero' Darragh
Over the next several weeks, many people will walk, run and cycle for 'superhero' Darragh

The family live in an old cottage that is not wheelchair accessible and his mother is forced to lift Darragh in and out of the buggy multiple times a day to carry him to his bedroom, to the kitchen and the bathroom.

“I can only do it for another few months,” she said, “he’s a big boy for his age.” 

But inspired by 'superhero' Darragh, the local community havse rallied around the now five-year-old and his family, taking on a number of challenges to help cover the costs of making the family home a liveable one for their new needs.

Over the next several weeks, many people will walk, run, and cycle in a 'Dash for Darragh' organised by Oola GAA club to help the family meet their €80,000 target, with more than 1,300 people having already donated to the GoFundMe page ‘Future for Darragh’. 

"I still have hope that there is a lot more in Darragh,” Ms McCully Ryan said, “even just the little things that he does. The little smiles at appropriate times..."

"I know there's more in him.”

You can donate to Darragh and his family here.

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