Boy’s struggle raises awareness

HOWLAND, Ohio (WKBN) – At first glance, Ethan Hoffman looks like any average 11-year-old boy. But over the past decade, the Howland boy’s journey through childhood has been filled with challenges and hope.

Ethan has a rare disorder known as Bartter Syndrome. It’s a disease that affects the kidneys. After four years of trying to figure out what was wrong with their son, Ethan’s parents, Lilia and Daniel Hoffman, were shocked by the diagnosis and decided to take action.

“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.

WKBN 27 First News provides commenting to allow for constructive discussion on the stories we cover. In order to comment here, you acknowledge you have read and agreed to our Terms of Service. Commenters who violate these terms, including use of vulgar language or racial slurs, will be banned. No links will be permitted. Please be respectful of the opinions of others. If you see an inappropriate comment, please flag it for our moderators to review.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s