“It was very painful and devastating for us because we didn’t know what was happening,” said Lilia Hoffman. “But for both of us, we knew something was wrong.”
Not only is the condition rare, it is also very painful.
“It has been hard to live with because I have to take a lot of pills, and I don’t know what normal feels like,” said Ethan.
But Ethan’s life depends on that daily medication. And even with the relief the medication brings, there are other challenges.
“Without the medication, there are a lot of side effects. Even with the medication he gets severe muscle cramping, still induces vomiting, still gets headaches, goes through a lot of weakness, a lot of issues,” said Daniel Hoffman.
Ethan’s family recently visited the Ohio Statehouse in Columbus to raise awareness of the disorder in front of state senators. The objective was to pass a bill to make the month of May Bartter Syndrome Awareness Month in Ohio.
“I wanted to create an awareness month for children so I can help them and to prevent them going through what I went through,” said Ethan.
Senate Bill 281 was passed by the Senate and beginning next year, May will be Bartter Syndrome Awareness Month.
“For him to get up in front of the senators…some adults couldn’t even do that,” said Daniel Hoffman. “For him to get up and speak was awe-inspiring. We enjoyed it.”
Ethan’s family says there’s still more to be done. The Hoffmans plan to take their initiative to Washington.