“I am happy to see that Bartter Syndrome Awareness Day has been passed by the Ohio Senate,” said Senator Cafaro. “It is important that we bring attention to this rare, but life-threatening, disease that affects our children. I am hopeful that the Ohio House of Representatives also sees the importance of this bill.”
In 2013, Warren, OH, residents Liliya and Daniel Hoffman started the Bartter Syndrome Foundation in honor of their son, Ethan. Ethan was born with Bartter Syndrome and suffered greatly for the first four years of his life before receiving the proper diagnosis. The Hoffman family began the foundation to help others who may be struggling to find a diagnosis and treatment for their own loved one.
The Hoffman family released the following statement on the introduction of yesterday’s bill:
“Abraham Lincoln once said, ‘It’s not the years in your life that count. It’s the life in your years.’ Our son, Ethan, has an incurable rare genetic kidney disorder, which causes premature birth and detrimental symptoms that can lead to cardiac arrest without treatment. At 12 years old, Ethan has become an advocate for his disease, termed Bartter Syndrome. In his short lifetime, he has already helped a plethora of other families and continues to spread awareness and advocacy to undiagnosed individuals and save lives through diagnosis and treatment.”
“It is Ethan’s mission to nominate May 30th as ‘National Bartter Syndrome Awareness Day’ to reach out to the newly diagnosed, educate the general public on this life-threatening chronic disorder, and ultimately find a cure. Ethan is a fighter and has accrued a lifetime of progress in his short tenure on earth, promoting awareness for the disease he is destined to defeat…”