A Melbourne mum paid tribute to her little boy-Parkinson ‘s youngest sufferer in the world-who died after potentially life-saving coronavirus surgery was postponed.
Mum of two Rebecca Marsh said her final goodbye to her son Jahleel, four, on August 1, following a cardiac arrest at the hospital by the four-year – old.
At just three months of age, Little Jahleel was diagnosed with Amino Acid Decarboxylase Deficiency (AADC)-an exceptionally rare condition known as “Parkinson ‘s baby.”
The brain disease made him the youngest in the world.
Melbourne’s 41-year-old Rebecca had been raising funds to bring her son to Poland to undergo potentially life-saving surgery expected to take place in May of this year.
But the procedure-known as Gene Replacement Therapy-was postponed because of strict travel restrictions imposed due to the global COVID-19 pandemic.
Jahleel died last week after having suffered a heart arrest due to complications with his condition – which his mum says could have been stopped if he had the opportunity to undergo the procedure.
Now his grieving mother Rebecca and 11-year-old brother Khaleed share his storey to help raise awareness of the condition.
They also want to plead with people to comply with COVID-19 restrictions so other kids can get the life-saving surgery they need more quickly.
“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 the pandemic made it more difficult than it needed to be and caused extra stress in a time of immense grief.
“People need to stop being so selfish when it comes to COVID-19 and stopping the spread,” Rebecca 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 of 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.”
Mum Rebecca is raising money to help with the financial strain that comes with the sudden loss of a child – including funeral costs.
“I never expected it to happen like this,” Rebecca said.
“had so much hope that Jahleel was going to be able to go to Poland and get the surgery he needed.
“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.
“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.”