The hardest part of being an MSD family is the constant grief we carry knowing that our son doesn’t have a fair shot at life.
Our MSD Journey
We, Holden and Melissa Duchon, are parents to two wonderful kids: Ella and Ethan. After having Ella, we were ecstatic to welcome Ethan into our family, but his diagnosis of MSD changed our lives forever.
Our diagnostic journey began once we noticed Ethan was having difficulty meeting developmental milestones. He had hearing and vision impairment, so we thought that after getting hearing aids and glasses he may be able to catch up with those milestones. Instead of improving however, Ethan began to show signs of regression. There were times when it seemed like he would suddenly forget how to roll over. It was then that we decided to do further testing. After going through an MRI scan, doctors found a 7th and 8th nerve abnormality which prompted a referral to a geneticist. It took multiple rounds of testing and months of waiting until we were finally given an answer.
When we got the diagnosis for MSD, we just thought, why us? The grief of losing what we thought we were going to have was devastating. The next couple of months felt like navigating a rough wave. While there were some days where navigating it was manageable, there were others where it was pulling us under completely. The geneticist who had given us the diagnosis was disappointingly blunt, and we were basically told to google the disease since he did not have much experience.
However, Amber and the Foundation showed us the light at the end of the tunnel. The foundation has not only helped connect us with so many other families, but they’ve also served as a beacon to help guide us through this journey. Their support has truly made us feel like we belong, and reassured us that we were doing our part for Ethan. While rare disease is an uphill battle, our family and MSD community have shown up to support Ethan every step of the way.
MSD has continued to run its course, and Ethan has unfortunately lost nearly all mobile and cognitive function. In 2020, he underwent G-Tube surgery to assist in eating since he would have aspiration issues. And yet, Ethan’s resilience remains remarkable. Even with MSD, Ethan, or Bugsy as we like to call him, still has a special connection with all of us. With his sister Ella, he recognizes her voice instantly and they have an unbreakable bond. We are so grateful to have him in our lives.
Written by Chi Tran (Student Ambassador)
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