On September 28, 2016, Ethan Duchon was born to mom Melissa, dad Holden, and big sister Ella. But before Ethan’s first birthday, his parents noticed him struggling with mobility - he had trouble sitting and standing on his own.
“Ethan was born at forty weeks,” recalled Melissa Duchon. “Natural normal pregnancy, born happy, healthy. He had issues with meeting some of those milestones."
That wasn’t all. As an infant, Ethan came down with pneumonia four times. The illness led to multiple hospital stays. He also suffered hearing loss and vision impairment.
The Duchons took Ethan to doctors for more than a year, but did not find definitive answers until meeting with a University of Miami geneticist. A few months before his third birthday, on June 24, 2019, Ethan’s family learned his heartbreaking diagnosis: Multiple Sulfatase Deficiency. MSD is a rare, fatal genetic disease, for which there is currently no cure.
“At that point we were just, you know, shocked and overwhelmed,” said Holden Duchon.
The disease means Ethan’s body is unable to eliminate cell waste. It results in a sudden loss of motor and communication skills around age three.
“This cellular waste just continues to build up and build up,” Holden explained, “just basically deteriorates their body.”
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MSD is so rare, there are fewer than a 100 known cases worldwide, though researchers suspect that figure could be underreported. Melissa and Holden decided to channel their grief into the search for a cure. They discovered foundations performing MSD research in the US and Ireland.
On February 29, 2020 - Rare Disease Day - they formed a non-profit in honor of their son.They used the letters of his name to form the title: STRENGTHAN.
“We felt we could come into play to bring awareness and help fundraise,” said Holden, noting a hundred percent of donations fund ongoing or future projects. “Nothing for personal use for Ethan.”
Their son now requires constant care. Ethan is unable to speak, walk, or eat on his own. But he still has the ability to do something else: smile.
“You’ll get a smirk or an actual laugh will come out,” said Melissa. “Those are the moments you really cherish and hold onto, because they’re getting rarer.”
The Duchons are marking Ethan’s fourth birthday with an online auction thanks to donations from local businesses and friends. As they celebrate their son, Melissa and Holden are grateful.
“I think it’s extremely special,” said Melissa. “I’m not a hundred percent guaranteed his next one, so I think every birthday needs to be bigger than the last one.”
To learn more about supporting the search for a cure, click on this link.
