Rebecca Marsh with her son Jahleel. Photo / Jahleel's Journey to Gene Replacement Therapy/Facebook
Rebecca Marsh with her son Jahleel. Photo / Jahleel's Journey to Gene Replacement Therapy/Facebook
A Melbourne mother has shared her heartbreaking story of losing her child after the coronavirus pandemic stopped the family travelling to Poland for life-saving surgery.
Rebecca Marsh, 41, was scheduled to take her son Jahleel to Poland for surgery for gene replacement therapy to treat his Amino Acid Decarboxylase Deficiency(AADC).
Jahleel was diagnosed at just 3 months old with the rare disorder that is known colloquially as "children's Parkinson's".
The surgery was due to take place in Poland in May after a fundraising campaign by his mother, but travel restrictions because of the Covid-19 pandemic meant it had to be postponed.
Now the coronavirus pandemic that denied the family a chance at life-saving surgery overseas is also affecting funeral preparations.
"I'd never wish any parent to lose their child but I'd never wish for any parent to lose their child in the situation Melbourne is in at the moment," Marsh said in another video.
Photo / Jahleel's Journey to Gene Replacement Therapy/Facebook
"It's really, really difficult trying to get stuff organised, trying to get his funeral organised. I want his life celebrated with a lot of people around us, I think he deserved that and that's what I want but obviously Covid is around and there are things in place that prevent us from doing that at the moment."
Jahleel's 11-year-old older brother Khaleed hadn't seen his brother for a week because of the Covid restrictions, but got to spend an hour with him before he died.
Multiple fundraisers have been set up to help the family.
