Oar inspiring children

Image Glenn Daniels / Bendigo Advertiser.

November update: THEY DID IT! Congratulations to the incredibly dedicated Boating for Brain’s crew, fundraisers and supporters, no only have they raised over $200,000 for RCH Neurology, they’ve also broken a Guinness World Record!

In comparison to the critical health battles taken on by Clementine Evans and Olivia Christen, the plan for 22 people to break the Guinness World Record for the longest dragon boat journey might seem like … messing about in boats.

Actually it’s serious business and it all centres around the exceptional skill and care of The Royal Children’s Hospital’s (RCH) Neurology Department.

These beloved daughters inspired their fathers to gather a team to paddle 600 kilometres in around six days along the Murray River. Comprised of parents of children whose lives have been transformed by the department, friends and dragon boat club members, the team is striving to break a world record on the way to raising more than $200,000. The funds will support a specialised neuroscientist within Neurology for the management of brain scans of children with epilepsy, brain tumours, stroke and malformations.

The current Guinness World Record of 545.56 kilometres for the longest recorded dragon boat journey was set on the Missouri River in the USA in 2010.

The Boating for Brains team embarks on 3 November, so training is now at peak intensity.

Olivia’s dad Peter described the participants as “friends too silly to say no last November.

“Everyone’s doing up to 15 hours a week of strength and conditioning training and trying to get two or three water sessions into that mix,” he said. “People have a few niggles and general tiredness and soreness and visits to physios but nothing serious. Overall everyone is in good shape and working on technique so they use the right muscles.”

Although the group tries to train together as much as possible, the actual event will be the first time the full team will paddle together and no wonder; some are coming from as far afield as Sydney, Brisbane, Western Australia and even Taiwan. Those distances will shrink dramatically once they’re off and paddling, however, with participants squashed two to a bench in a boat not much bigger than a rowing eight.

Support boats in front and behind will carry some of the 19-strong support crew while the rest will provide back-up on land.

Once the team sets off from Yarrawonga with Swan Hill in their sights, there’s no turning back. In order to comply with the notoriously stringent Guinness World Record rules, this is no relay or interchange. While participants can leave the event, no one new can take their place. Some video footage is required so GoPros will be worn. Independent verifiers will note progress every few kilometres incorporating GPS data. Already the crew have been grateful for the support they’ve received, with high profile donors coming on board including Siemens Healthineers and Omegapharm.

A long way before Yarrawonga, the challenge started with parents of Neurology patients asking RCH neurologist and epilepsy expert Dr Simon Harvey, “What can we do to thank you”. When Simon pointed to the critical nature of brain scan analysis and the funding needed to support it, Clementine’s dad Alex took no further convincing.

“High quality neuroimaging was key to understanding Clemmie’s condition and the incredible procedure undertaken to bring her back to us,” he said.

“At five months of age she started having around 100 seizures a day. She was overtaken by a storm of abnormal electrical activity in her brain and her brother Hugo [seven] was often the only person who could reach her.

“It was only when we came into the care of the RCH that we were able to get a firm diagnosis. We sent an image of Clemmie’s brain taken at another hospital to the RCH which turned it into a three-dimensional scan. It identified a structural flaw causing her seizures and took away all the uncertainty around her condition.

“The skill of the RCH team was outstanding, but there’s another characteristic that radiates throughout the hospital – the focus on providing care. This hospital treats children, not patients.”

Now five years of age, Clementine had one operation in 2014. RCH image processing enabled neurosurgeons to safely plan their surgical route, accessing hard-to-reach parts of her brain without affecting functional brain structures. Clementine hasn’t had a seizure since that operation but she has lost some cognitive skill.

“Going into surgery, we had no real certainty about whether she would be able to walk or talk,” continued Alex. “Now she’s at a mainstream kinder with an aide and enjoying recognising letters and numbers. The fact that she will start mainstream primary school next January is nothing short of a miracle.

“Her future outlook has some uncertainty, but she has the chance to lead a normal and productive life.”

Olivia, six, underwent two 12-hour surgeries to disconnect over a quarter of her brain.

“At 20 months, Olivia had severe epilepsy and was lost in the fog with only glimpses of the brightness in her eyes,” said Peter. “Simon [Harvey] could also glimpse that brightness.

“She‘s gone from 120 seizures a day to none since the second surgery. Now she has full motor function and is growing and developing every day. She’s on a pogo stick, riding her scooter and playing babies with her sister, Amelia, who’s very protective of her.

“I give full credit to the amazing Neurology team at the RCH and this technology. I’m not sure any of this would have been possible without the neuroimaging we’re supporting with this event.”

Every year, the RCH assesses whether more than 150 children with uncontrolled epilepsy are suitable for surgery, with one third referred from interstate.

The RCH brain imaging research laboratory is a collaboration with the Murdoch Children’s Research Institute (MCRI). The paddlers were recently taken on a tour of the lab by Dr Simon Harvey and team to understand what difference their hard-earned funds will make. For many in the team, it was their first visit to a children’s hospital.

“We got incredibly positive feedback from them,” said Peter, “about the passion and drive of people working there.”

Simon returns the praise to the paddlers for their passion and drive.

“Their funds will guarantee the brain scan analyst position for three years,” said Simon, “but we’re working with the hospital to establish this as a fully-funded clinical position.

“The RCH is the only hospital in Australia that has this important clinical position that works between three areas: medical imaging, neurology and neurosurgery where the care is provided, and research groups in MCRI. This funding will cement it in clinical practice and that’s a very novel thing.

“This work is all about pulling out much more information from the scans. The data is taken out of the scanner with images provided to surgeons so they can do more sophisticated surgery backed by a deeper picture of brain function, connections and structure.

“Basically, we can do safer surgery more simply.”