YouTuber Mitchell Orval runs half-marathon for baby battling SMA
New dad and YouTube sensation Mitchell Orval has run a half-marathon to raise money for a family and their battling baby. HOW TO HELP
Gold Coast
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FUNNY influencer Mitchell Orval wasn’t laughing when he hit the final seven kilometres of his first ever half-marathon, which he’d decided to do for a family and their battling baby that he’d never met before.
Orval shot to internet fame with his Angry Dad YouTube channel sharing videos of his father’s outburst to his 253K subscribers.
The new father shares another YouTube channel with partner Chloe Szepanowski, who welcomed their son Artis to the world in August last year.
With a new perspective on life, Orval said he knew he had to do more when Kate and Grant Gouch reached out to him to share a GoFundMe page for their baby Oakley who was diagnosed with Spinal Muscular Atrophy (SMA), the children’s version of Motor Neurone Disease (MND).
“I just thought if that was me in that position I would want some help,” Orval said.
“One in 35 people carry the SMA gene and if two people carrying the gene conceive there’s a one in four chance of the baby getting SMA.
“The technology is there for prenatal-testing and Kate and Grant are pushing for it to happen because if you do the test and find out then the child can be treated pre-symptoms and live a normal, happy life.”
The groundbreaking treatment is in the pipeline but needs a further $3.3 million and Orval is hoping to raise $100,000 to go towards the funding and the Gouch family.
Orval runs 3km every morning but only gave himself a week to prepare for his 21km journey from Burleigh to Surfers Paradise and back, which he completed last Sunday.
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“A few different people reached out and said they’d join me and a few more rocked up on the day,” he said.
“At least 10 people ran with me and another 30 or so were waiting for us at the end filming and clapping.
“I hit a wall at about 14 kilometres and that last seven were tough but the group reminded each other why we were there.
“Then the last three kilometres Oakley’s dad and granddad ran with us and the emotions were flying and got me through.”
Those wanting to help can donate at au.gofundme.com/f/mitchell-for-oakley
‘It’s really difficult to explain to them what’s going on’
IT wasn’t the fourth birthday party George Kyriakakis and Cass Ebenstreit wanted for their little girls – surrounded by hospital equipment, with threats of cancer and looming pandemic.
But unwrapping toys and cleaning cupcake icing off their twin daughters’ faces is the closest thing to normal the Gold Coast family has had since daughter Rosie was diagnosed with cancer last month.
“At the beginning of May she became unwell, she was having fevers around the clock and a lump in her neck,” says mum Cass, recalling they initially presented to Tweed Hospital before ending up at Gold Coast University Hospital for a biopsy on a lymph node.
It was followed by heartbreaking news: Rosie was diagnosed with anaplastic large cell lymphoma, a rare cancer which makes up just one per cent of non-Hodgkins lymphoma cases.
Two weeks after she first got sick the family was forced to uproot from Tugun to Brisbane Children’s Hospital oncology ward for treatment.
It marked the first time Rosie has been separated from twin sister Lily.
“They understand a little bit but it gets hard, because I think they think (Rosie’s) going to get better really quickly,” she said.
“Both are really confused by the length of time so it’s really difficult to explain what’s going on.”
Apart from a brief visit to celebrate their birthday earlier this month the “mischievous” pair were separated for almost two weeks.
Hospital rules due to COVID-19 mean one child can have both parents present but not a second sibling too.
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Cass said: “That would mean my husband and I could be (in hospital) with Rosie, but then there would be no one to be with Lily.
“So (George) would be with Lily, I would be with Rosie, and then every second day I’d get to see Lily for two hours and Rosie wouldn’t get to see Lily at all.
“It was really tough because they’re identical twins so they’ve never been separate. It was really horrible.”
Cancer has also brought questions proving impossible to answer for such young girls, things no amount of picture books and bedtime stories can explain.
“The hospital has provided special books and stories you can read to the kids that explain what lymphoma is, what chemotherapy is, what a central line in your chest is,” Cass said.
“And a naso-gastro tube, feeding tubes, that she’s going to be looking different as well.
“It’s hard to explain it, and I don’t know whether they completely understand but we’re just working with them to make sure they’ve got a good understanding of what’s going on.”
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Rosie is now undergoing chemotherapy, with the first round expected to last at least the next four months. If successful, she has a 75 per cent chance of survival.
For every round of chemotherapy afterwards, that number drops.
A GoFundMe to support the family – with Cass unable to work and George having to cut his hours – and find temporary housing in Brisbane has now raised more than $20,000 since June 10.
The girls’ uncle Lee Kyriakakis has planned a charity bike ride later this year, taking on the 620km Oodnadatta track in South Australia.
More than anything the family has been moved by the “overwhelming” amount of kindness and support given to them since Rosie’s diagnosis.
Talking about the number of people who have been in contact already, Cass soon becomes emotional.
“It’s just so nice to know people love them so much and want her to get better,” she said.
“Even people I haven’t seen for years have contacted me to tell me they’re thinking of her, they’re praying, they’re sending positive thoughts.
“Just sending us so much love, and I honestly do believe it makes a difference to her.”
For more information and to donate to Rosie’s GoFundMe page, visit gofundme.com/f/ride-for-rosie or visit the Ride for Rosie Facebook page.
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