Margaret River’s Shawcross family helped amid MSMDS diagnosis for three-year-old daughter

The Margaret River community is rallying to help a family whose daughter has been struck down by an incredibly rare disease.

A GoFundMe page was set up this week to support the Shawcross family after three-year-old Riley suffered a stroke as a result of a lifelong condition diagnosed after she underwent open-heart surgery at just nine weeks.

There are only about 60 cases recorded worldwide of MSMDS — multisystemic smooth muscle dysfunction syndrome — and little is known about it, according to Riley’s mother Stephanie Shawcross.

Riley has also been diagnosed with dysphagia, a persistent cough and cerebral palsy, which affects her motor skills.

“The ACTA2 Alliance has been formed by other families affected by the disease and they are working tirelessly to find new information to help families like ours,” Mrs Shawcross said.

“Unfortunately, this condition means that Riley is susceptible to stroke and last Thursday, July 4, she had her first stroke.

“Riley lost function of her left arm. In her words ‘it’s not listening to me, it’s all floppy’, which made for a quick trip to Margaret River Hospital,” she said.

“We have always been aware that this could happen, so we were able to identify the signs quickly.”

What followed was a lightning trip to Perth Children’s Hospital, with CT and MRI scans confirming the worst.

The family are regular volunteers with the Augusta-Margaret River Hawks Football and Netball Club and the group immediately rallied around them.

Hawks president Kris Longmore-Dodd said the family was always the first to offer help and now it was the club and wider community’s chance to give back.

“The Shawcrosses tirelessly support the club and the community and I’m amazed that despite the hurdles they face, their first concern is raising awareness of Riley’s condition that might lead to better outcomes for other kids in the same boat,” he said.

“Truly a remarkably selfless, brave and giving family that we are fortunate to have at the Hawks.”

Mrs Shawcross said her daughter’s arm was responding to treatment and the challenge of facing the lifelong condition was greatly eased by strong community support.

“Riley will be doing daily rehab therapy to give her the best opportunity to see her left arm return to full function,” she said.

“We are absolutely overwhelmed and have been left completely speechless by the generosity and support of our community near and far, through messages, support, help and the GoFundMe.”

She and her family thanked those who swung into action on their behalf while they were focused on navigating work and commitments, including looking after Riley’s siblings Parker and Kane, as well as trips to Perth.

“This will make the next few months a little easier as we navigate helping our little lady be the best she can be,” Mrs Shawcross said.

To donate, visit gofundme.com/f/lets-support-the-shawcross-family.