Emiko, Jeremy, Ari, and Jenga
Run Melbourne 2021
At Emiko’s mid-pregnancy scan, her son Ari was diagnosed with Congenital Diaphragmatic Hernia (CDH). From the moment of diagnosis, Emiko, searched online to find information about this rare birth condition and came across our organisation on Facebook. She joined our private online support group and began to read the questions and answers shared by other members of our community undergoing the same experience.
Emiko and Jeremy were concerned when they learned the statistics for children born with CDH.
“We were told that each year, around 112 families in Australia receive a CDH diagnosis – a condition that severely affects a baby’s lungs. Half of these babies survive. Half of these babies do not,” recalls Emiko. “That is 61 mammas each year in Australia who grow their babies but aren’t able to bring them home. Over 100 parents whose hearts break irreparably. We were so fortunate that Ari’s diagnosis was on the milder side; that he survived.”
Baby Ari was born in July 2020 in a year when the word unprecedented was used an unprecedented number of times.
Tough COVID restrictions were in place at the hospital when Ari was born which added to the challenges faced by Emiko and Jeremy. At just 4 days old, Ari underwent surgery to repair the hole in his tiny diaphragm. Emiko and Jeremy then watched on with hope as their little boy improved, and gradually began to breathe on his own.
Throughout her pregnancy, birth, and Ari’s first year, Emiko continued to contribute to the CDH community by sharing information in the online support group, and in October 2020, Emiko became a volunteer Director on our Board. Since joining our team, Emiko has also returned to work, yet still found time to project manage our new website and develop new videos to help other families find the information they need.
In early 2021, Emiko and Jeremy decided to raise funds and awareness for CDH by encouraging friends to join their running team “Team Tiger” and taking part in Run Melbourne.
“Honestly, I do not love running. I find it hard to get motivated. I think it’s quite boring. But every time I run, I feel my lungs expand, I get out of breath; I feel so grateful that my body can do it. I truly believe that one day when he is older, Ari’s lungs will be strong enough to see him come running with his Dadda, his Mamma, and his dog,” says Emiko.
The fun run was due to take place in July 2021; perfect timing to celebrate baby Ari’s first birthday. Unfortunately, due to COVID restrictions, the event was unable to go ahead in person and instead became a virtual run.
Undeterred, Emiko and Jeremy went ahead with their virtual run and on the 31st of July they completed a half marathon as a family with baby Ari in his stroller and dog, Jenga as their pacesetter.
Due to the event change, Team Tiger were offered an opportunity to take part in the Sandy Point run in September. Emiko and Jeremy decided to sign up in the hope of taking in part in person but unfortunately COVID restrictions meant they were unable to do so.
Not to be discouraged by lockdowns, Emiko and Jeremy, with Ari and Jenga in tow, used their daily exercise time to complete their second virtual half-marathon on the 11th of September, 2021.
“While we are disappointed that we couldn’t run a proper event with our beautiful team of friends and family, we are really proud of what has collectively been achieved. Over $4,000 raised to support CDH babies and their families. So much encouragement and support. Awareness for CDH Australia and the brilliant work they do,” says Emiko. “This has been such a heart-warming journey and a great reminder of the kindness of people in a year that has been so rough and testing for so many.”
Team Tiger raised an incredible $4,134.50 to support the CDH community.
Press play on the video below to watch Emiko, Jeremy, Ari, and Jenga share their story
Become a CDH Superstar
Join an organised event and fundraise for us. CDH Superstars receive free merchandise to raise CDH awareness at the event. Visit our events calendar to find out more.