Little Inara Hijniakoff spent the first two months of her life in hospital with parents Chloe and Johnathon with her 24 hours a day.
And sitting there right beside them was the parish of St Declan’s at Penshurst.
Born with an incredibly rare genetic condition and one of only 10 sufferers of KCNK9 Imprinting Syndrome in the world, her parents were told she would never walk or talk, never attend a mainstream school, would always be tube-fed, have a moderate to severe intellectual disability and need full-time care for the rest of her life.
And after recently celebrating her first birthday, the dedicated parents say they wouldn’t change a thing and believe her name Inara – meaning shining light – couldn’t have been more appropriate.
With the support of their “life-giving” parish, they now look at the devastating news as a blessing which has bought them closer not only to their family and friends but also their faith.
Mum Chloe, who is expecting their third child, said home cooked meals were left on her doorstep for months on end, constant offers of help and prayers flooded in and parish priest Fr Chris Ryan rang constantly to offer a listening ear and shoulder to cry on.
“It was during the toughest time of our lives that we really experienced first-hand the generosity and love that is at the core of St Declan’s.”
And to thank them, Chloe is giving back to the community she feels gave so much by volunteering as the Parish Sacramental Coordinator.
Despite her daughter’s endless medical appointments and her job teaching religion at Mount St Benedict College at Pennant Hills, the incredibly busy mum looks after the 300 children who go through the sacramental program annually.
“It was during the toughest time of our lives that we really experienced first-hand the generosity and love that is at the core of St Declan’s,” she said.
“I could never express my gratitude enough just knowing that people were out there supporting and loving us and our daughter.
“Not only were they an incredible support network when we went through the most challenging times in our life, but they are also where we live out our faith and serve.
“It inspires me to use my time and gifts to give back and that is exactly what it is like at St Declan’s.
“For me, with two very small children who don’t behave in restaurants just yet, Mother’s Day will be spent like every other day, but giving a little more thanks for everything we have.”