Telethon: How Down Syndrome WA helped ‘besties’ Madeleine and Daisy find friendship for life

Madeleine and Daisy don’t like it if you refer to them simply as friends.

“We’re besties,” they will correct you with big smiles.

Their bond is unshakeable, forged from hours of imaginary child’s play, time spent watching KPop Demon Hunters, singing their favourite pop songs or discussing which Disney princesses they like best.

The pair have grown up together and have seen each other through different life stages and phases — from primary school to starting high school together earlier this year. The 12-year-olds rely on one another, like when Daisy underwent spinal surgery for scoliosis in August last year and Maddie was there to help her with any physical tasks when she returned to school after missing almost an entire term.

Maddie’s parents Jaime and Richard Hayes met Daisy’s mum Anna Currie through a Down Syndrome WA playgroup when the girls were merely months old.

They went seeking connection and support and with the hope that the friendships formed would benefit their girls in the future.

More than a decade on Jaime puts it best when she says, “we’re like extended family now”.

These are the kinds of connections Down Syndrome WA hopes to spark through its various programs, playgroups and social events that act as a support network for families.

“Maddie wasn’t hitting milestones at the same time as her neurotypical twin sister Issy, so it was good to be among other parents whose children were at the same stage as Maddie and who understood some of the concerns and challenges,” Jaime says.

Richard adds that DSWA events allowed the new parents to see older children and adults with Down syndrome and how their lives were panning out.

“Seeing what the future might look like was reassuring,” he says.

While Anna, who is a single parent, knew it was likely Daisy would be born with Down syndrome, Jaime and Richard did not find out until after their twin daughters were born that Maddie had the genetic condition.

Anna benefited from prenatal assistance from DSWA, while Jaime and Richard engaged with the organisation after Maddie’s birth.

“Having them come and talk to us at the hospital and tell us all the things Maddie would be able to do really helped,” Jaime says.

DSWA, which has been receiving Telethon funding for 10 years, also offers practical help navigating the National Disability Insurance Scheme, recommending treatments, therapists and schools.

“Having that support was phenomenal because it can all be quite overwhelming in the beginning,” Anna says.

Maddie and Daisy have now moved through playgroup and the primary-aged Kids Club and progressed to DSWA’s appropriately named Friends For Life program. Eventually they will move into the adult group, Aim High, which will help them with life skills and forging independence.

Their parents find it comforting to know that as they approach adulthood, they will have one another to rely upon.

“It means a lot that, as they grow and mature, they are doing it together and have each other to lean on,” Richard says.

The families can’t speak highly enough of the support they have received through DSWA and the networks and connections they have forged through the organisation.

“The Telethon funding is really important to Down Syndrome WA,” Richard says. “The regular person might just see it as a donation but the benefits on the other side can be life-changing. ”