A Melbourne mum has paid tribute to her little boy, the world's youngest Parkinson's sufferer, who tragically died after his lifesaving surgery was postponed due to the coronavirus pandemic.
Mum-of-two Rebecca Marsh said her final goodbye to her son Jahleel, four, last week after he suffered a cardiac arrest while in hospital.
Jahleel was diagnosed with Amino Acid Decarboxylase Deficiency (AADC), a one in 56 million disease described as ‘children’s Parkinson’s’, at just three months old, making him the youngest in the world with the brain disorder.
The 41-year-old mum from Melbourne, Victoria, Australia, had been fundraising to get her son to Poland in order to undergo lifesaving surgery that was due to occur in May this year.
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 surgery.
Now, his grieving mum Rebecca, and his older brother Khaleel, 11, are sharing his story to help raise awareness of the condition – while also pleading with others to abide by coronavirus regulations so other children can get the lifesaving surgeries they need faster.
“Jahleel was a bit sick for a month, but nothing was really adding up and he seemed okay,”Rebecca said.
“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.
“Jahleel was fighting for a few more days, he opened his eyes a bit when I would sing to him.
“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.
“On Saturday, we turned off the ventilator and he died five minutes later.
“If the pandemic didn’t happen, Jahleel would still be here. We could have been in Poland in May and got the surgery he needed.
“I have seen the amazing things gene replacement therapy has done for other children who were like Jahleel, and I just wish he could have got the chance.”
Rebecca said that due to the pandemic, it made it more difficult than what it needed to be and caused extra stress on her and her son in their time of grief.
“People need to stop being so selfish when it comes to COVID-19 and stopping the spread,” she said.
“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 realise that with the hospital policies in place at the moment, siblings and other parents are not allowed to say goodbye properly.
“Khaleed had not seen Jahleel since the 24th July as he wasn't allowed up to the ward anymore or allowed into ICU unless something dire happened.
“He finally got to spend an hour with Jahleel late at night after his blood pressure dropped dramatically.
“We weren't allowed any friends into the bereavement suite to support us.
“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.”
The single mum 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.
“I never expected it to happen like this, I had so much hope that Jahleel was going to be able to go to Poland and get the surgery he needed,” she said.
“Now that this has happened I feel so lost, I don’t know what to do. We want to have a funeral, but we can’t have any more than 10 people. It’s really hard.
“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.
“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.
“Jahleel was so special, there was something about him, he was such a beautiful boy. 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.”
To help Rebecca in this heartbreaking time, you can donate here.