‘I’D DO ANYTHING FOR A HUG FROM MY TODDLER’
This brave little Aussie boy is the youngest person in the world with Parkinson’s disease
Loving Melbourne mum Bec Marsh has only ever wanted one thing from her youngest son – for him to be able to hug her back.
Looking at her three-year-old boy Jahleel’s bright eyes and cheeky smile, you’d never know the unimaginable hardships he has already faced in his short life. When the toddler was just three months old he became the youngest in the world to be diagnosed with a rare one-in56 million condition described as “children’s Parkinson’s disease”.
The brain disorder is known as aromatic amino acid
decarboxylase deficiency, which is a neurological genetic condition that affects the way signals are passed between certain cells in the nervous system.
“He is such a sweet little boy. He can only smile a few minutes a day, but it’s so lovely to get a glimpse into the beautiful child he truly is,” Bec, 41, tells Woman’s Day.
“He will often just crack up laughing, and it warms my heart. He can be so cheeky, but he is also super sweet and has such a gentle personality.”
‘TRAPPED’ INSIDE
The Melbourne mum-of-two says the condition leaves her son “trapped” in his own body and added that the toddler has already spent over half of his life in hospital.
“Jahleel was diagnosed at three-and-a-half months, which meant he was the youngest child in the world to have it,” says Bec.
‘To have him hug me would be the most amazing feeling’
“Doctors told me not to Google anything about his condition. They said his life expectancy without treatment is around seven years old. That news broke my heart into a million pieces.
“It’s something no parent should have to hear.”
Jahleel is confined to a wheelchair and classed as a quadriplegic as he is unable to walk, talk or eat – and has been tube-fed for his entire life.
A typical day sees him suffer from spasms, seizures and constant vomiting up to 12 times a day, which must be suctioned out by his mum or brother Khaleed, 11, to prevent choking.
“He can’t be left on his own for any length of time and needs round the clock care to keep him alive,” Bec explains.
Without getting the life-saving surgery he needs, doctors have told Bec that her youngest son may not live past his seventh birthday – but there is hope thanks to a new pioneering treatment, which could change everything for Jahleel.
The toddler has been accepted to undergo a groundbreaking treatment known as a gene therapy brain operation in Warsaw, Poland, in May – but the surgery alone will cost almost $120,000, and now single mum Bec is pleading for help.
As Jahleel needs to be able to lay down for the 27-hour flight from Melbourne to Warsaw, Bec will need four business class tickets for herself, her two sons and Jahleel’s carer, and will have to pay for accommodation and living expenses in Poland.
While the treatment is experimental, Bec said the early results have been positive – with most of the children who have undergone the operation going from being quadriplegic, nonverbal and tube-fed to walking and verbal in under a year.
“It’s just so hard that money is the only thing standing in the way of my child being able to have a life,” she says. “‘We need help, any little donation people can spare could change our lives.
THE SIMPLE THINGS
“The hope is that he will be able to walk, eat food, learn sign language or even start talking. I’d love him to be able to do simple things like kick a ball with his brother. Khaleed was so excited to have a little brother when I was pregnant, he thought it would be someone to play sports with.
“For me, I can put my arms around him and give him a hug, but he has never been able to hug me back. To feel his arms around my neck, to have him hug me would be the most amazing feeling in the world.
“‘He is so brave, and I just want him to have a childhood.”
To donate, go to fundrazr.com/ onerarebutsmallstep
Former high-flying Bondi businesswoman Debbie Pearce gave up her marketing career to realise her dream of creating a sanctuary where happy sheep and pigs are so affectionate that they come when called like dogs and cats.
Debbie swapped her heels for a pair of farm boots in 2014 to move with her partner Jamie Bedford 130km north from the shores of Bondi to a hillside at
Laguna in the Hunter Valley – and build an animal sanctuary.
Aptly named Where Pigs Fly, it’s now home to more than 130 residents – from sheep, pigs and goats to cows, hens, horses, turkeys and donkeys. Most of the animals were rescued from situations of cruelty, abuse and neglect.
“I think one of the joys for me is the transformation that you see in an animal, seeing them either physically or emotionally repair,” Debbie says.
“If you treat them with kindness you get to see their individuality, which is what we are all about, showing people that farmed animals are no different to companion animals.
“We provide a platform to enable people to connect with farmed animals that most only know as food – we don’t get emotional, we just plant the seeds of compassion and use the animals as the ambassadors.”
STARS OF THE SHOW
When it comes to ambassadors that can make a connection, Debbie has some certified stars on her hands, like the sheep that know their names and come when they’re called, even from 300 metres away.
Then there’s Bubbles, the 100kg pig with a social media
following and a penchant for apples, who Debbie has raised since Bubbles was found dodging traffic on a busy rural highway, just hours old.
“Bubbles is just like a dog – she’s got a big Instagram following on our page and everyone knows her, from the UK to the US to here,” she says.
“She’s so friendly and loves people. She does zoomies like a dog and comes when she’s called. She’s spent a lot of time indoors with me – we even watched the royal wedding of William and Kate together when she was smaller. She’s one very cool pig.”
HEALING SPACE
Just like Bubbles, Debbie is as happy as a pig in mud with the new life she has created providing a sanctuary to these animals in need.
And it’s not just farm animals that are finding solace in the rolling green hills and postcardperfect landscape of Where Pigs Fly.
In previous years the sanctuary has taken part in a work experience program for young adults with autism. A similar program will be relaunched this year by one of the original participant’s mums, Kate Hungerford, whose son Jacob still returns once a week to spend time on the farm.
Kate and her husband Terry are also committed volunteers, having fallen in love with the place while watching the positive effect it had on their son.
Debbie says the sanctuary has given her – and so many other people – a real purpose in their lives.
“I always say it’s a sanctuary for animals and for people,” she tells Woman’s Day.
“We get volunteers that drive up from Sydney once a week – they leave Bondi at six, drive up, pick up poo all day and other jobs, then drive home, dirty, sweaty... and just have the best day.
“I think people just need this kind of place.
“I look in my wardrobe and I’ve still got all these corporate blouses and suits and court shoes and I think, ‘When was that life?’
“I don’t regret one thing about moving and doing this. That’s not to say it’s not without its challenges and its hardships, but if you live to your purpose, I think you’ve achieved much in life.”
‘I always say it’s a sanctuary for animals and for people’