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.
The funds raised will go towards the home nursing care of children with highly complex medical and life-limiting conditions.
Here in NYC are taking climbing a local mountain peak as our #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.
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!
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.
For more information, visit www.jackandjill.ie
- Una Marley
- Karen Dwyer
- Damien Keane
- Mary O Keeffe
#1 fundraising platform
People have raised more money on GoFundMe than anywhere else. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more