New York fundraiser underway for little Laois girl with rare illness

Conor Ganly

Reporter:

Conor Ganly

Email:

news@leinsterexpress.ie

New York fundraiser underway for little Laois girl with rare illness

Jake and sister Olivia

A New York resident with strong Laois connections has taken up the baton for children like her niece who has a rare illness at home in Ireland.

Edel Fitzpatrick, who lives in Yonkers, hopes that this October you can help support a fundraiser for children with rare medical conditions in Ireland. She explains why.

"My little niece Olivia is among 362 children nationwide, including six in Laois, who receive life-saving support from the Jack & Jill Foundation this year.

"Olivia who just turned two-years-old, is the only child in Ireland with a rare condition called leukodystrophy-6, which means that her brain is shrinking.

"We are hoping people can take part or donate for the ‘Up the Hill for Jack and Jill’ fundraiser, a socially-distanced challenge going ahead throughout October," she says.

Edel says the funds raised will go towards the home nursing care of children with highly complex medical and life-limiting conditions. She outlined the background on her GoFundMe page. More below picture.

"Olivia was born in 2018 with no signs of illness and was happily beginning life at home in Ballyroan with her mum Amanda, dad Paul and big brother Jake.

"Five months later, she began to show a lack of head control and was not feeding well. She went to Portlaoise hospital and stayed there for a month, before she was transferred to Crumlin Children’s Hospital for investigations.

"MRI tests showed abnormalities and after that Olivia was fed through her nose. On a second trip to Crumlin, she aspirated and a one-day appointment turned into a 77-day hospital stay. At that point, Olivia was diagnosed with leukodystrophy-6.

"Olivia has a mutation of the TUBB4A gene and it basically means her brain is shrinking.

"The doctor told us that Olivia might not make it to August 2019 but she is a fighter and has thankfully been stable since June last year. She has just turned 28 months old!"

In NYC Edel is taking climbing a local mountain peak as an #upthehill and hoping to raise some money in the process to give back to this foundation in Olivia’s name.

Registration or a donation of $19 will support one hour of home nursing care.

The fundraiser is part of an SOS appeal to fill a €200,000 funding gap for the foundation, due to Covid-19 cancelling many fundraising events this year.

Donate to Edel's Gofundme page here

For more information, visit www.jackandjill.ie