The First-Annual Heterotaxy Syndrome Awareness Walk in Livingston County is set for Monday, May 4, at the Mill Pond in downtown Brighton on Monday, sponsored by Malachi’s House of Hope. The event promotes hope, unity, awareness, and is a reminder to families affected by heterotaxy that they do not have to walk this devastating road alone. Registration opens at 6:30 p.m., and the two-mile walk begins at 7 p.m.
Heterotaxy Syndrome —a rare, life-threatening, congenital condition in which chest and abdominal organs are misplaced, malformed, or absent, commonly affecting the heart, spleen, liver, and intestines — involves serious, often fatal, complex congenital heart defects and unusual symmetry in organ placement.
Treatment for heterotaxy often includes surgical repair of heart and other organs for children and infants, which often requires parents to travel to and stay for extended periods of time at a hospital that offers these life-saving procedures. The travel, lodging, and other expenses related to treatment are almost never covered under health insurance, and they present distinct challenges for families affected by this syndrome.
This is where Malachi’s House of Hope has stepped in to offer hope and fill the gap.
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Founders Chijioke “CJ” and April Nwabuike of Brighton created this non-profit organization out of their own personal, heart-wrenching experience. Their son Malachi was discovered to have heterotaxy before he was born. As so many others before them, CJ and April had to rearrange their lives to help their son survive.
“Malachi’s condition was discovered early,” April said, “and we were quickly thrown into a whirlwind of in utero diagnosis, NICU planning, emergency travel, and the heartbreaking reality of having a medically fragile child. We have spent weeks in hospitals, months away from home, and nights sleeping in cars or hospital chairs, all while trying to hold our family together.”
Now CJ and April feel so very blessed with a 5-year-old boy who is wonderfully full of life.
“In the middle of it all, Malachi gives us courage,” April said. “His smile lights up rooms. His resilience inspires action. And his life is a reminder that every heartbeat matters, and so does every family trying to protect it.”
Malachi’s House of Hope provides temporary housing, emotional support, and resources to families of children diagnosed with heterotaxy, with polysplenia and other related medical conditions. The organization offers assistance from the point of in-utero diagnosis through long-term treatment by connecting families with a supportive community, critical care guidance, and financial relief during relocation for medical services.
One family who has benefited from Malachi’s House of Hope is Mohammed Kalach, and his wife Abla Samouk of Canton, Mich. They have four children, two of whom have heterotaxy, Mary, 8, and Mila, 5 months as of January 2026, both of whom have needed medical procedures at the University of Michigan Hospital. This has required the couple, like CJ and April, to get creative and stretch their resources.
Last Fall, Mohammed was fortunate enough to take a couple of months off work from his job as a mechanic at Delta Airlines and also dip into savings to be with Mila at the hospital while she was receiving treatment. During that time Abla stayed home to take care of the other kids.
This is anything but an easy life adjustment.
“When I see kids suffering with no end, it is hard, it is devastating,” said Mohammed. “It’s like going through a meat grinder. You are not the same when you go through something like this. I’m different. My priorities are different.”
Mohammed and Abla found a good social worker who connected them with a number of services and resources that provided toys, snacks, help with utility bills and small amounts of money to cover some incidentals. This social worker also connected them with Malachi’s House of Hope, where they received lodging in a hotel, as well as emotional support from people who have been on the same road. It made a difference to know that they were not alone, and as a result Mohammed wants to give back.
“When someone is hit by tragedy like this with long hospital stays,” Mohammed said, “it is helpful to hear from others who are on the other side and have made it through. These families give us hope because they have been through it and they pay it forward. Now I want to do that for others.”
He talked about how these challenges have changed him. He said he doesn’t pay attention to color, race, religion, or other things that can often separate people. Instead, he focuses on the needs he sees around him.
Last October, Mohammed and his family were moved in solidarity with another family they had just met at the hospital who received a heart for their child. They brought in a cake and wanted to celebrate the success with them.
Mohammed and Abla plan to attend and speak at the Heterotaxy Syndrome Awareness Walk on May 4 so that other families who face the difficult journey can know they are not alone.
“When someone is in need, you help regardless,” said Mohammed. “This is what my experience has taught me.”
While other parents might have high hopes for their kids to excel and be extraordinary, Mohammed and Abla see things differently. Mohammed reflects about the hopes he and Abla have for their 8-year-old daughter. “For Mary, we just want her to be normal,” he said. “We pray for God to provide patience for us and the gift that is life for our children.’
Mary is currently doing well after multiple surgeries shortly after birth and then again at 3-4 years old to address her heart, intestines, and being born without a spleen. She is seeing a cardiologist currently for regular check ups, but otherwise doing well.
For more information about Heterotaxy Syndrome, click here.
For more information about Malachi’s House of Hope — including how to make a donation — click here.
