Northern Ireland

Response to fundraising effort for grandson of Down legend Brendan Mason overwhelms family

Leo Moley has been diagnosed with KAT6a Syndrome
Leo Moley has been diagnosed with KAT6a Syndrome Leo Moley has been diagnosed with KAT6a Syndrome

The family of Co Down toddler diagnosed with an extremely rare genetic condition have been overwhelmed by support for their recently-launched fundraising drive.


Leo Moley from Seaforde, who celebrates his second birthday on July 14, was recently diagnosed with KAT6a Syndrome, a condition for which symptons include varying degrees of intellectual disability, delays in reaching developmental milestones and delays in being able to speak and communicate.


Additional symptoms include diminished muscle tone, abnormalities affecting the heart, eyes and gastrointestinal.

Leo was born premature at 32 weeks and in November last year doctors identified a hole in in his heart. He is now awaiting the go-ahead for five-hour open heart surgery at Our Lady's Children's Hospital in Dublin.

Following the diagnosis of KAT6a Syndrome in May, parents Laura and Shane decided to launch a fundraising drive to raise money for Leo's treatment, specialist equipment he'll require in the future, and to raise awareness of the condition.

Intensive therapies for the condition are available in England through the Napa Centre, which Leo's family hope he can attend once he's undergone heart surgery in the coming weeks.

The family also want to raise funds for charities and organisations that have helped Leo, including the Children's Heartbeat Trust and the KAT6 Foundation.

They are being supported in their efforts by Leo's grandparents Down and Loughinisland Gaelic football legend Brendan Mason and his wife Christine.

On Friday night, Loughinisland GAC donated approximately £3,000 from the gate receipts of their Down ACFL Division 1 clash with Bredagh, which the former Down man manages alongside Frank Dawson.

Leo's uncle Rory Mason is the fourth generation of his family to play for the Loughinisland club and county.

Speaking to The Irish News, Brendan said the family had been overwhelmed by people's generosity.

"The response in such a short time has been quite incredible," he said.

"Individuals and organisations have come forward with all sorts of initiatives to help – it has been really overwhelming."

The former Down footballing legend said people had already offered to raise money by doing a skydive and the 'Seven Peaks Challenge' in the Mournes.

"We're already well on our way to reaching the £10,000 target in a matter of weeks as the response has been truly phenomenal," he said.

"The family is so grateful to everybody and we're delighted that this effort will help raise awareness about this very rare condition."


:: To donate to Leo's cause got to www.gofundme.com/f/leo-living-his-best-life