BUSHMEAD couple Maddy Long and Mark Cusworth are taking part in Run for a Reason this Sunday to commemorate the life of their late son Koen, just days after what would have been his first birthday.
Koen was born on May 25 2017 with myotubular myopathy, a rare genetic neuromuscular condition affecting one in 50,000 – generally males – that neither of his parents carried.
A year on, Ms Long said they wanted to do something positive to remember their only child and created Team Koen which has raised more than $13,500 for Muscular Dystrophy WA (MDWA).
“Koen’s very rare neuromuscular condition meant that he had reduced muscle tone and suffered respiratory distress, passing away after 12 days,” she said.
“The sadness and shock of losing him unexpectedly (he was diagnosed after his death) is something no one should have to go through and unfortunately it is a typical outcome for baby boys born with severe myotubular myopathy.
“It was utterly heartbreaking to lose our baby boy and on what would have been his first birthday we wanted to raise some money for other kids with rare genetic diseases, specifically for MDWA who support families and individuals affected by myotubular myopathy.”
Ms Long said it was important for her to raise awareness of the condition while also commemorating the life of Koen, whose name means strong and brave, while also supporting other families who had lost a child.
“We have had many conversations explaining to people what our son Koen had, raising awareness of the condition and more broadly about losing a child is something I’m now quite passionate about,” she said.
“Once you start talking openly about your experience in losing a child you realise how many other people have tragic stories and I think sharing my story has given me a sense of unity and a source of strength.
“I hope that by sharing our story and talking about Koen’s life we can help other parents and families to find the support they need if they are affected by the loss of a child or by neuromuscular conditions.”
To donate to Team Koen, visit hbfrun2018.everydayhero.com/au/madeleine.