Like many five-year-olds across Ireland, the 31 August was a big day for Lara Gilson as she finally started “big school”.

“She ran in,” says her mother, Jackie Carlile, proudly. “Long may that last!”

Yet Jackie admits it was a day she thought she might never see when Lara was diagnosed with Down Syndrome and a heart problem when she was born prematurely at just 28 weeks. But despite battling a range of health issues since then – ranging from a brain haemorrhage and open heart surgery to suspected meningitis and a lymphoma scare – Lara has not just survived, but thrived.

“Lara wasn’t handed life: she earned life,” says Jackie of her daughter’s courage. “And she just takes it in her stride.”

And Jackie, her partner Paul Gilson and their daughters Lara and Belle, who live in west Dublin, are lending their support to the Buy My Dress event on 30 September to raise vital funds for The Down Syndrome Centre, which has been of huge support to their family.

Jackie explains that neither she nor Paul had any clue that Lara had Down Syndrome before she was born, and that it was a “terrifying” time.

“I knew we could fix the heart, I knew there was a chance she could come through the prematurity – but the Down Syndrome was forever,” she recalls of the shock of the initial diagnosis.

“I didn’t know how to deal with that. I didn’t know anybody. I was terrified, felt alone, the future … I didn’t think she had a future, to be honest.

“It was a really scary, difficult, lonely time.”

Despite the odds being stacked against her at the start, however, Lara has overcome more challenges in five years than most people will face in their lifetime.

“No matter what’s thrown at Lara, she’s a fighter,” says Jackie, who describes her daughter as the “happy-go-luckiest” girl she knows – with a verve for life and a social calendar that would be the envy of many.

“She goes to ballet, she goes to yoga, hip-hop dancing, stage school, swimming,” lists Jackie. “She loves books, she loves the iPad, YouTube, all the usual five-year-old things … and she loves birthday parties!”

Jackie attributes much of Lara’s progress to the services provided by The Down Syndrome Centre in Sandyford, Co Dublin, which supports 200 families every week. These are especially essential now that Lara has started in mainstream school, as she can no longer avail of early intervention services and must go on the HSE waiting list for further supports.

“It’s become vital to us at this point because there’s no physical therapy available for Lara, there’s no speech therapy, there’s no occupational therapy, no physio therapy,” lists Jackie. “In that regard, they (The Down Syndrome Centre) have become a lifeline to us.”

Indeed, as well as essential therapies, Lara has attended the SKIP programme (special kids intervention programme) as well as a “Get Ready for School Camp”, which has helped her with basics such as writing her name, reading and developing independence skills, such as how to manage her lunch box, bag and uniform for school, so she can put her best foot forward in junior infants with the help of her SNA.

“In order for Lara to continue to thrive and continue to meet her full potential, she needs the centre – and she needs it now more than ever,” says Jackie.

Moreover, The Down Syndrome Centre has also provided the Gilsons with a network of other families to connect with. For any parent whose child has just been diagnosed, Jackie would encourage them to reach out to the organisation and not to feel alone.

“If I knew then what I know now, I wouldn’t have worried half as much,” she reflects on her own journey.

“Lara is the best thing that’s ever happened to us.” CL