Little Leo Moley, diagnosed with one of the rarest genetic conditions known in the world, successfully underwent open heart surgery at a Dublin hospital.
Leo, diagnosed with KAT6A Syndrome and born with a hole in his heart, braved a near five hour operation at Our Lady's Children's Hospital in Crumlin.
"Leo's surgery went as planned and he spent a short time recovering in ICU. He has been moved to the main ward and is managing well," the family, of Seaforde, Co Down, said in a social media post.
"Having bother with his tummy which is nothing new for Leo, it's just more irritated than normal. He's a super patient and a brave wee man. Keep him in your thoughts please."
Fundraisers have been organised across Down and Armagh, including by several GAA clubs, to raise money both for the care of Leo but also to raise awareness of the condition, diagnosed so far in less than 400 children worldwide. Funds will be directed to the Children's Heartbeat Trust and the Kat6a Foundation.
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Leo's parents, Laura and Shane, a former Carrickcruppen GAA player, are also receiving support from the child's grandparents, Down legend, and Loughinisland clubman, Brendan Mason and wife Christine.
Brendan previously told the Irish News the family was overwhelmed by people's generosity. As of Monday, a GoFundMe page had raised close to £19,000 from mostly individual donors, with more pouring in from fundraisers.
There are plans for a 'Seven Peaks Challenge' across the Mournes, Carrickcruppen organised a football blitz day, St Bronagh's, Rostrevor, women's team held a fundraiser, while the family has thanked Robert Tubman for completing a six hour endurance race around Montalto Estate near Ballynahinch to help Leo and others.
The Carrickcruppen blitz day raised more than £6,000.
"The response in such a short time has been quite incredible," said Brendan, whose son Rory is a current member of the Down team.
"Individuals and organisations have come forward with all sorts of initiatives to help – it has been really overwhelming. The family is so grateful to everybody and we're delighted that this effort will help raise awareness about this very rare condition."
Symptoms of the condition include degrees of intellectual disability, delays in reaching developmental milestones and difficulties with speech and communication. Other symptoms include diminished muscle tone, abnormalities affecting the heart, eyes and the gastrointestinal system.
The family hope Leo will attend the Napa Centre in London, the home of specialists in intensive therapies for children with various conditions.
KAT6A syndrome was only identified in recent times with advances in genetic sequencing. It happens when there is a change, or what is described as a spelling mistake, in the KAT6A gene. It is not passed on by either parent, which largely explains its uniqueness and rarity.
