Oliver Elsworth and his fellow riders battled ‘proper snow’ at Ben Lomond on their way to Glen Innes on Wednesday, July 19 in a journey taking them from Sydney to Brisbane to raise funds for his son’s rare illness, Phelan-McDermid Syndrome (PMS).

Six-year-old Ted was diagnosed with the disease, a deletion of chromosome 22 that results in developmental delays. While it’s incredibly rare with only 72 known cases in Australia, it’s one that much of the local community is familiar with due to its support of the Maybon family whose son Logan also has the syndrome.

Mr Elsworth and the riders met up with the Maybons at Smeaton’s Bakery (out of the cold) as they passed through town, enjoying a face-to-face meeting in contrast to what’s generally a social media-based support group.

While there are a couple of PMS families in Brisbane where Mr Elsworth is based, it was a pleasure for the team to make contact with the Maybons along the route. There is a Facebook group for PMS parents and one associated with the PMS Foundation of Australia, as well as a worldwide one specifically for mums and another for dads.

Mr Elsworth said his wife in particular had found the groups valuable.

With so few families in Australia afflicted, they tend to know of each other and it was like old friends catching up at the bakery meeting.

Logan’s mum Rochelle said with not many doctors familiar with the syndrome, she often found herself asking other parents for their ideas and experiences. She has even arranged a vacation with another PMS family.

“You shouldn’t have to cry alone,” she said.

Mr Elsworth said the network can be a salvation for isolated, lonely families.

He is joined on the ride by five friends, Andy Morrison, Pat McMahon, Phil Randerson and James Chesterman, aiming to raise $15000 to support Australian families to meet with the specialist who found the disorder.