By Jasmine Kazlauskas
The mum of a toddler who is the YOUNGEST IN THE WORLD to be diagnosed with a rare condition described as ‘children’s Parkinson’s disease’ said she just wants to feel her son hug her back.
Little Jahleel Marsh was diagnosed with Amino Acid Decarboxylase Deficiency (AADC) at just three and a half months old, making him the youngest in the world to have the rare children’s Parkinson’s disease disorder.
His desperate mum Bec Marsh, 41, from Melbourne, Victoria, Australia, said the condition leaves her three-year-old son ‘trapped’ in his own body and is best described as ‘children’s Parkinson’s disease.’
The brave toddler is classed as a quadriplegic and has spent over half of his short life in hospital, with Jahleel being unable to walk, talk or eat – but instead, is tube fed 24 hours a day.
A typical day sees him suffer from spasms and constant vomiting up to 12 times a day, which must be suctioned out by his mum or brother Khaleed, 11, to prevent choking.
Without getting the life-saving surgery he needs, doctors have told Bec that little Jahleel is not expected to live past seven years old – but there is hope.
Jahleel has been accepted to undergo a pioneering treatment known as a Gene Therapy Brain Operation in Warsaw, Poland, in May 2020 – but the surgery alone will cost €70,000 [$118,300AUD].
Now the single mum is making a desperate plea to the public to help get Jahleel the treatment he urgently needs to save his life.
Bec, who has a background in hospitality but is now a full time carer, said: “Jahleel was diagnosed at three and a half months, which meant he was the youngest child in the world to have it.
“His chances of having it are one in 56 million, so it’s incredibly rare.
“Doctors told me not to google anything about his condition. They said the life expectancy without treatment is around 7 years old.
“That news broke my heart into a million pieces. Its something no parent should have to hear.
“He can’t be left on his own for any length of time and needs round the clock care to keep him alive.
“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 boy he truly is.
“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.
Amino Acid Decarboxylase Deficiency (AADC) is an ultra-rare genetic brain disorder affects the body’s ability to produce the neurotransmitters dopamine and serotonin
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.
The single mum will also need to pay for accommodation and living expenses in Poland, as well as covering her rent and bills back home in Australia.
Whilst 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.
Bec said: “It’s just so hard that money is the only thing standing in the way of my child being able to have a life.
“I wish we could win the lottery or something, but I don’t think we’ll ever be that lucky.
“We desperately need help, any little donation people can spare could change our lives.
“The hope that will be 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 https://fundrazr.com/onerarebutsmallstep