Miranda Richardson / news@whmi.com

Heterotaxy Syndrome Awareness Day is coming up Saturday, May 4. And for the first time ever, Malachi’s House of Hope is hosting a Heterotaxy Syndrome Awareness Walk that same day in downtown Brighton.

The 2-mile walk is taking place at the Mill Pond starting at 7pm. Registration begins at 6:30pm. The nonprofit organization says the event promotes hope, unity, awareness, and is a reminder to families that they do not have to walk this devastating road alone.

Heterotaxy Syndrome is a rare, life-threatening congenital condition where chest and abdominal organs are misplaced, malformed, or absent. This commonly affects the heart, spleen, liver, and intestines, which involves serious, often fatal, complex congenital heart defects and unusual symmetry in organ placement.

Founders Chijioke “CJ” and April Nwabuike of Brighton created Malachi’s House of Hope after their son was diagnosed. April says their 5-year-old son Malachi gives them courage and that his smile is able to light up rooms.

Meanwhile, she also says their family has spent weeks in hospitals, months away from home, and nights sleeping in cars or hospital chairs. The nonprofit has been able to help families like Mohammed Kalach, and his wife Abla Samouk of Canton.

Two of their four children have Heterotaxy Syndrome and both needed medical procedures at the University of Michigan Hospital, and just like CJ and April, had to get creative while stretching their resources. Mohammed says it’s helpful to hear from others who are on the other side and have made it through.

A link to register for the walk, along with more information on Malachi’s House of Hope, is posted below. Pictured is Muhammad Kalach and his wife, Abla Samouk, with their four children, left to right, Ahmed, Ali, Mila and Mary.