It's taken several years, but thanks to the Royal Children's Hospital, Belinda Wethers has a diagnosis for her son Bodhi.
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This year the Wethers family is promoting the Good Friday Appeal to raise money for the Royal Children's Hospital.
Bodhi was diagnosed with Alpha-mannosidosis, an extremely rare genetic storage disorder.
Alpha-mannosidosis is characterised by an inability to properly break down certain groups of complex sugars in the body's cells.
Symptoms can include childhood dementia, hearing loss, intellectual disabilities, bone and joint problems, and frequent infections.
An animal lover, Bodhi often takes his pet chickens to school.
"Bodhi loves his animals," Belinda said.
"He generally packs his lunch and packs chickens to take to school.
"The other kids at the school are supportive of him as well. They look out for him, so we're very lucky.
"We've got a lot of animals. We breed a range of animals such as ostriches, macaws, and sheep. Bodhi's interest in animals is probably what's driven us to do what we do today, and we're hoping that in the future we may even open up an animal therapy place.
"It'd be great to give back to other families going through a similar sort of situation to us."
Bodhi is also fascinated by the rubbish truck, with mum Belinda hoping to organise a meet and greet with the bin man.
"It would make Bodhi's day."
After receiving a bone marrow transplant at the Royal Children's Hospital, Belinda says Bodhi is like a completely different child.
"Bodhi was diagnosed at the Royal Children's Hospital," she said.
"Once he was diagnosed we had to get a treatment plan.
"He had a bone marrow transplant in February 2022, and before having the bone marrow transplant he was heading down the path of needing to be in a wheelchair.
"He required six weeks of fibreglass casting on both legs because he could barely walk.
"Since having the bone marrow transplant, he's regained some of his hearing back.
"We were just hoping to plateau his symptoms and give him the best chance of life possible."
Belinda, who is also the principal at Pomonal Primary School said Bodhi had also improved at school, as well as an improvement in his hip dysplasia.
"Without the bone marrow transplant, even just 12 months on he would have deteriorated quite significantly," she said.
"This was a huge journey in itself. Bodhi didn't walk until he was 18 months, and it was when he started walking we realised he was deaf.
"It took another six months to get to the bottom of that. Then he needed grommets and adenoids taken out. At the age of four, he got his first hearing aid.
"Then he was diagnosed with a global learning delay, which then progressed into an intellectual disability diagnosis.
"At six and a half years of age, he was diagnosed with Alpha-mannosidosis."
For the last several years, the Wethers family have been on a journey to diagnose Bodhi and seek the right treatment for him.
Belinda said that when Bodhi was five, a GP tried to talk them out of a referral. However, Belinda felt there was more to Bodhi's health issues.
"We just had these gut feelings that there was more to more to it," she said.
"There were too many things wrong with him.
"We wanted the genetic tests, but then COVID hit, and we had to do it all through Telehealth.
"While we were waiting we came across some articles about another rare disease, which ticked all the boxes for another metabolic storage disorder, and that's what got us thinking something was going on with him.
"We were waiting for the geneticist, and one of the team members called to get our background history, and that's when we alerted them to our suspicion.
"It was an 18 months wait to get a diagnosis. Bodhi was five and was six and a half when he was diagnosed, and then it wasn't until he was seven birthday that he had the bone marrow transplant in July 2021."
Bodhi's sister Billie was a bone marrow match and didn't hesitate to help her brother.
Belinda said that at the time of the diagnosis, she was told there wasn't much the family could do for metabolic disorders but that a bone marrow transplant was an option.
"We did some research and found a family in New Zealand who had two children with the disease, and he was the founder of the Rare Diseases Foundation in New Zealand," she said.
"He put us into contact with several families all over the world.He also gave us the email for an oncologist at the Royal Children's Hospital. We emailed them directly, even though we didn't have a referral from a medical professional.
"She took on our email and got in touch with us. We were so lucky that we started with the oncologist."
Belinda said she was amazed to see how resilient Bodhi was throughout the process.
"To see so much improvement in such as short space of time is just incredible," she said.
"The fact that we've gone through the oncology pathway has opened up a huge amount of support for us.
"The Oncology Department is very well-resourced, and they have fantastic Outreach programs. Several charities supported us while we were in the hospital.
"He was supported by Challenge, and they provide camps and activities for Bodhi and his siblings.
"Bodhi's four siblings have all had the opportunity to go on camps with kids going through similar treatments to what their brother was going through. There's so much mental health support in networking with other kids going through the same thing. It made a difference."
Belinda said she was grateful for the medical professionals at the Royal Children's Hospital.
"Bodhi's disease impacts every part of the body system," she said.
"We've seen pretty much every specialist team there and they've all been just so accommodating and so easy to talk to. They're amazing professionals."
This year Belinda is urging everyone to give to the Good Friday Appeal. "The appeal enables them to do the research for all of these unique and rare diseases," she said.
"Without the funding for research, there would be millions of kids that would slip through the cracks and would not get diagnosed and treated. We're just so fortunate to have such a world-class hospital in Melbourne for the kids that need it."
You can keep up to date with Bodhi's journey on Facebook, Bodhi -a little boy with Alpha Mannosidosis
Donations can be made online at goodfridayappeal.com.au.
Vera Demertzis
Journalist at the Southern Highland News covering council yarns and community news. Got a tip or a story to tell? Email vera.demertzis@southernhighlandnews.com.au or call on 0427 250 908.
Journalist at the Southern Highland News covering council yarns and community news. Got a tip or a story to tell? Email vera.demertzis@southernhighlandnews.com.au or call on 0427 250 908.
