GoFundMe campaign started to help Midleton teen Luke and his family

Thirteen-year-old Luke Carr from Midleton is living with an illness known as Pitt Hopkins Syndrome
GoFundMe campaign started to help Midleton teen Luke and his family

Luke Carr from Midleton (centre) who is entering his eighth month in hospital with his parents Pa and Kathleen and brothers (from left) Alex and Zack. The teen is at the centre of a GoFundMe campaign to assist the family with everyday expenses and Luke’s ongoing care.

A Cork teen is entering his eighth month in hospital in Dublin, with all the stress that entails for his family, and now friends have launched a GoFundMe campaign to help support them.

Thirteen-year-old Luke Carr from Midleton is living with an illness known as Pitt Hopkins Syndrome, which is characterised by intellectual disability and developmental delay, breathing problems, and recurrent seizures or epilepsy.

Over the last number of months he has fought through a number of medical setbacks including sepsis and MRSA.

The community has already raised more than €30,000 for the family in the hope that they will be able to cover some of their overall expenses including fuel for hospital trips and help with Luke’s ongoing care.

Luke was transferred from Cork University Hospital to Crumlin Children’s Hospital in May and has since undergone a series of surgeries and stints in the Intensive Care Unit. His parents Kathleen and Pa are taking turns travelling to Crumlin so Luke can have someone at his bedside at all times.

The couple is juggling these tasks with raising their other two children in Cork — Alex (16) and Zack (10). Pa is no longer able to work due to the relentless demands of Luke’s condition while, Kathleen, who suffers from Multiple Sclerosis (MS), is currently unable to claim Carer’s Benefit while Luke is confined to hospital.

The 13-year-old is also non-verbal, often making it difficult for him to communicate the source of his pain.

SUPPORT

Fiona O’Mahony — a friend of the family behind the GoFundMe campaign — spoke of the level of support for Luke and his family in the community.

“Kathleen is bowled over by the support,” Fiona said. “She can’t believe the kindness of people even though she and the family are so loved in the community. People are coming through for them because they want to help.

“Kathleen is one of the nicest people you could ever meet and what she is going through is horrific and horrendous.”

Fiona praised the family’s resilience.

“A situation like this can drag you down and bring you to the ground,” she said. “This has really lifted the family.

“They have been in hospital living in a bubble for so long that it’s hard to understand how the world is going on outside as normal.”

She says the difficult situation is also taking its toll on Luke’s siblings: “There are so many things they are both missing out on as a result of what is happening.”

She hopes that funds raised can offer some comfort to the family

“They have so much devotion for Luke. You can see that they adore him. We would love to see them all reunited even if Luke was just able to return to CUH. All we can hope is that his recovery goes smoothly and there are no more hiccups along the way.”


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