GRAND RAPIDS, Mich. — February 29, 2024 marks Rare Disease Day, and a local mom is learning just what that means after her eight-month-old son was diagnosed with a rare disease.
Sarah Gordon's son Elijah is one of around 200 babies diagnosed with Mowat-Wilson Syndrome.
Now, Sarah, Elijah and the rest of their family are ready to embark on a journey as they understand more about his illness.
"I'm already so proud of that kid. And he's eight months old, and he has gone through more than anybody that I know," Sarah Gordon said. "He had an open heart surgery at three months. And he just had a hypospadias surgery about two weeks ago."
Sarah says her youngest boy was born without a piece of his brain.
"And then when he was born, and he was born with a couple of different anomalies that we were not expecting. That's kind of when it took us back a little bit. And again, more for the unknown, unknown of everything," Gordon added.
The unknown is never an easy feeling for parents. So, Sarah and Matt Gordon got answers. Elijah has Mowat-Wilson Syndrome.
"There's congenital heart defects. Generally defects, there's just physical anomalies that you can't see in utero. So it affects him physically and cognitively, and will for life," Gordon said.
Doctor Linda Rossetti at Corewell Health Helen DeVos Children's Hospital is there for every step of this family.
"So interestingly, Mowat-Wilson syndrome is one of those conditions that we're always taught about in residency," Rossetti said.
Rossetti adds Elijah is the only patient she's seeing with this condition. She explains the patients she sees often have a rare disease.
"Individual differences that they're talking about are very rare. But every patient who comes in to see me has their own rare story," Rossetti said.
"95% of kids with Mowat-Wilson syndrome are nonverbal or have very, very little speech," Gordon said.
But one night, a moment Sarah won't ever forget.
"I had a dream the other night that he said, Mama, and I tell you what, I am holding on to that. So, so strong," Gordon said.
Gordon hopes that by getting Elijah's story, others might recognize that they have Mowat-Wilson Syndrome.
She adds that she would like to get Elijah the therapy he needs. You can see how you can help Elijah Gordon.
