€145k raised for family of Irish toddler who died of rare condition in Australia

A major fundraising drive has been launched to support the Irish parents of a young girl who tragically died from a rare genetic condition in Australia earlier this week.

Maisie, who lived in Sydney with her parents – Conor Kehoe from Askeaton in Co Limerick and Danielle O’Sullivan, originally from Kells in Co Meath, died on Monday, unexpectedly from a very rare neurometabolic disorder – Leigh Syndrome.

On the morning of Friday July 5, Maisie suffered a seizure while Danielle was getting ready for work. The little girl was rushed to the hospital via ambulance, but unfortunately, her condition worsened from there.

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Maisie, who was just 17 months old, fought bravely all weekend with Conor and Danielle by her side, but sadly the toddler passed away on Monday evening.

Initially, doctors suspected Maisie had contracted meningitis, but it was later confirmed that she had Leigh Syndrome.

Leigh syndrome is a severe neurological disorder that usually becomes apparent in the first year of life. This condition is characterised by progressive loss of mental and movement abilities and typically results in death within two to three years.

Conor and Danielle’s friends have rallied around the devastated couple following the tragedy and have launched a GoFundMe page “to help ease some of the financial pressure on them during this incredibly difficult time”.

So far the GoFundMe Page has raised over $234,104 AUD (€145,530) and Conor and Danielle have thanked those who have supported the family during this tough time.

A message shared on the page read: “On behalf of Danielle and Conor they would like to express their heartfelt thanks and appreciation on the overwhelming support that they have received during this terrible time.

“Conor and Danielle also want to express their heartfelt thanks to the amazing doctors and nurses at Sydney Children’s Hospital in Randwick and the Kevin Bell trust fund, who couldn’t have been more helpful.”

The money raised in the fundraiser will also help cover the cost of bringing Masie’s body back to Ireland and a funeral will be held at St. Andrew’s Catholic Parish in Sydney on Tuesday before Masie makes her final journey home.

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