Four-year-old boy who was the youngest Parkinson's sufferer in the world dies in Melbourne after his life-saving surgery was called off due to harsh coronavirus restrictions
- Jahleel, four, died last week as he was unable to get surgery due to COVID-19
- He was diagnosed with Amino Acid Decarboxylase Deficiency at 3 months old
- He intended to travel to Poland in May 2020 to have gene replacement therapy
A four-year-old boy with a rare type of Parkinson's disease who needed pioneering surgery has died after his operation was delayed due to the coronavirus pandemic.
Little Jahleel, 4, was due to fly with his mum from their home in Melbourne to Poland to undergo the operation, but couldn't because of global travel restrictions.
Mother-of-two Rebecca Marsh said her final goodbye to Jahleel last week, after he suffered a cardiac arrest while in hospital.
Jahleel was diagnosed with Amino Acid Decarboxylase Deficiency (AADC) at just three months old - making him the youngest in the world with the brain disorder.
Ms Marsh, 41, had been fundraising to get her son to Poland in order to undergo pioneering surgery that was due to occur in May this year.
'If the pandemic didn't happen, Jahleel would still be here,' she said. 'We could have been in Poland in May and got the surgery he needed.'
Mother-of-two Rebecca Marsh (pictured, back) said her final goodbye to her son Jahleel, 4, (front) last week after he suffered a cardiac arrest while in hospital
Little Jahleel (pictured) was diagnosed with Amino Acid Decarboxylase Deficiency (AADC) at just three months old - making him the youngest in the world with the brain disorder
However, because of the strict travel restrictions imposed due to the global COVID-19 pandemic, the procedure – known as Gene Replacement Therapy - unfortunately had to be postponed
Because of the strict travel restrictions imposed due to the global COVID-19 pandemic, the procedure – known as Gene Replacement Therapy - had to be postponed.
But tragically Jahleel passed away last week after suffering a cardiac arrest due to complications with his condition – which his mum says could have been prevented if he had the chance to undergo the surgery.
Jaheel was unable to travel to Poland to have his surgery due to travel bans put in place by the Australian government to stop the spread of COVID-19, his family said.
The surgery would have allowed doctors to replace mutated versions of Jahleel's genes with healthy copies.
Only specialists in Poland were able to perform the procedure.
Australians have been stopped from travelling internationally since March 18, and anyone wishing to leave the country must be granted an exemption from the Department of Home Affairs.
Poland also implemented a travel ban preventing all foreign citizens from entering the country.
European Union citizens have been allowed to travel to Poland since June 17 but must quarantine for two weeks upon their arrival.
Now his grieving mum, and his older brother Khaleed, 11, are sharing his story to help raise awareness of the condition – while also pleading with others to abide by COVID-19 regulations so other children can get the life-saving surgeries they need faster.
Ms Marsh, who has a background in hospitality, said: 'Jahleel was a bit sick for a month, but nothing was really adding up and he seemed okay.
Jaheel was unable to travel to Poland to have his surgery due to travel bans put in place by the Australian government to stop the spread of COVID-19, his family said. Pictured: All the drugs Jahleel needed to take per day to stay alive
Ms Marsh (pictured, back) said her son's decline in health was almost unexplanable
Jahleel's oxygen suddenly dropped while the family were at home and once he arrived at hospital he began to feel better. However doctors kept Jahleel (pictured) for observation
'His oxygen dropped suddenly at home, so we got an ambulance and took him to the hospital. He got better once there, but the doctors kept him in for observation.
'He was fine, the nurses said he was smiling and happy. Then on Monday he took a big breath and then stopped, he suffered a cardiac arrest.'
She said her son fought for a few more days and when he would open his eyes she would sing to him.
But it was a losing battle.
'Jahleel was fighting for a few more days, he opened his eyes a bit when I would sing to him,' Ms Marsh said.
'But the next day his blood pressure and heart rate dropped. I looked into his eyes and knew he was gone, although he was technically alive his spirit was gone.
Now Jahleel's (centre) grieving mum (right), and his older brother Khaleed (left), 11, are sharing his story to help raise awareness of the condition
She said her son fought for a few more days and when he would open his eyes she would sing to him
'On Saturday, we turned off the ventilator and he died five minutes later.'
She said she has seen the amazing things gene replacement therapy can do and she wished her son had gotten the chance.
Ms Marsh said that due to the pandemic, it made the horrible situation even difficult than it needed to be, causing extra stress on her and her son in their time of grief.
She said: 'People need to stop being so selfish when it comes to COVID-19 and stopping the spread.
Ms Marsh she said she turned off her son's life support last week after his blood pressure dropped
Khaleed was only allowed an hour with Jahleel extremely late at night after his blood pressure had dropped dramatically
Khaleed wasn't allowed to see his little brother while he was in hospital due to coronavirus
She said she has seen the amazing things gene replacement therapy can do and she wished her son had gotten the chance
Khaleed shares a moment with his brother Jahleel before the four-year-old passed away on August 1
'My son could only spend one hour with his brother because of the restrictions in place at the hospital, he did not have enough time to say goodbye.
'I don't think people realize that with the hospital policies in place at the moment, siblings and other parents are not allowed to say goodbye properly.'
Her other child hadn't seen his brother since July 24 and wasn't allowed into ICU or the ward unless something dire had happened.
Khaleed was only allowed an hour with Jahleel extremely late at night after his blood pressure had dropped dramatically.
Ms Marsh said she wants people to realise the impact of the pandemic on people who need medical treament
Ms Marsh (pictured with her son) said that due to the pandemic, it made the horrible situation even difficult than it needed to be, causing extra stress on her and her son in their time of grief
No friends were allowed inside the bereavement suite in the hospital to support them
The single mother (pictured) is raising money to help with the financial strain that comes with the sudden loss of a child – including funeral costs and to help give her and Khaleed time to grieve
No friends were allowed inside the bereavement suite in the hospital to support them.
'That week and the very last day I lost precious time with Jahleel because I was having meetings trying to get things in place. I walked out of the hospital completely alone,' Ms Marsh said.
The single mother is raising money to help with the financial strain that comes with the sudden loss of a child – including funeral costs and to help give her and Khaleed time to grieve.
'That week and the very last day I lost precious time with Jahleel because I was having meetings trying to get things in place. I walked out of the hospital completely alone,' Ms Marsh said
Ms Marsh said she feels lost and doesn't know what she should do to commemorate her son
She said she never expected she would lose his son and that he would never get to have his surgery in Poland.
Ms Marsh said she feels lost and doesn't know what she should do.
'We want to have a funeral, but we can't have any more than 10 people. It's really hard,' Ms Marsh said.
'I couldn't work before as I was a full time carer. But now my carers payments have stopped since Jahleel passed, and it is near impossible to find a job in the current situation.
'We want to have a funeral, but we can't have any more than 10 people. It's really hard,' Ms Marsh said
Ms Marsh took the chance to describe what a brilliant boy Jahleel was before he passed away
Ms Marsh said her son (pictured) was so special and that he was 'such a beautiful boy'
'When he smiled at you, his eyes were full of love. We miss and love him dearly,' Ms Marsh said
'I need the time to grieve with my son, not to stress about what we are going to do now. So any little donation anyone can give would be so appreciated.'
Ms Marsh took the chance to describe what a brilliant boy Jahleel was before he passed away.
'Jahleel was so special, there was something about him, he was such a beautiful boy,' she said.
'I miss his smile and his giggles, he lit up the world when he would laugh.
'When he smiled at you, his eyes were full of love. We miss and love him dearly.'
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