LUKE CARR - Fundraising Campaign

Hi. We are friends of Kathleen and Pa. Their son Luke from Midleton, Co. Cork is 13 years old and has Pitt Hopkins Syndrome, a rare, genetic neurological disorder. Luke is non verbal and non mobile. He was transferred from Cork University hospital to Crumlin Childrens' hospital last May, almost 8 months ago, where he has undergone endless surgeries and trips to theatre and ICU. He was orally fed but has now got a peg, a jejunostomy and a stoma fitted. Life will never be the same for Luke and his family again. He is currently being treated for MRSA, Sepsis and RSV alongside his pain management and continuing feeding issues.

His wonderful parents, Kathleen and Pa have been taking it in turn to look after Luke, who is a pupil of St. Paul's Special school, and their other two children,  Alex 16 and Zack 10. So, when one parent is in Dublin the other is at home with Alex and Zack. This has taken a fierce toll on the whole family.

Pa is no longer able to work as a result of the relentless demands of looking after Luke and is now in receipt of a social welfare allowance. Kathleen herself has MS . The half carers benefit that she did receive for Luke has been stopped as Luke is deemed as being cared for by the hospital. Kathleen is continually caring for her son, changing him, aspirating him, emptying his stoma etc. She and Pa are there to calm and appease him, but because he cannot communicate what ails him, they have to endure the horror of his screams and tears as he is gripped with acute spasms of pain.

It was hoped that Luke would be transferred back to Cork University hospital but he is not well enough at the moment. His situation is continually changing.

We humbly ask for your support for Kathleen and Pa.

Any funds raised will be used for fuel for their trips from Cork to Crumlin, their parents accommodation expense, daily hospital expenses and their loss of income. The funds will also go towards nursing care for Luke when he does eventually come home.


Fiona O'Mahony
County Cork

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