Help Baby Silas & His Family Through the Hardest Journey

Baby Silas was born on January 29, 2025, a seemingly healthy and perfect little boy. But within his first week of life, his parents, Steven and Marijane, knew something wasn’t right. Silas rarely cried and struggled to feed. Month after month passed with little development and countless doctor visits, but they didn't have any answers.

At 8 months old, Silas became critically ill. After 8 days in the hospital and extensive testing, Steven and Marijane received Silas's devastating diagnosis of 4H POLR3 Leukodystrophy; an extremely rare, genetic, and incurable disorder.

This diagnosis changed Silas and his family's futures.

Silas will never walk, talk, crawl, or eat on his own. He will never grow up playing alongside his 3 brothers. Tragically, this condition is terminal, with a very short life expectancy. Silas is now 11 months old, and every single day with him is precious.

Silas is deeply loved by his three big brothers - Nathan (7), Sawyer (7), and Zacharia (5) - and by two parents who would do anything to protect all four of their boys.

Marijane left her job when Silas was born to care for him and the family full-time. Steven works in construction and has done everything possible to provide for his family, while also attending medical appointments, spending long nights in the hospital, and showing up every day as a father and husband.

Just two days after Christmas, Silas began struggling to breathe. He is now back in the hospital, battling multiple viruses. With his condition, even a simple cold can be life-threatening.

The family is now facing an urgent relocation to be closer to extended family support and the Children’s hospital equipped to care for Silas. But the financial strain has become overwhelming. One income, missed work, hospital stays, and medical expenses have left them struggling to make ends meet.

Steven is now facing an impossible choice - go to work to keep a roof over his family’s head or stay at the hospital with his wife and baby, knowing they don’t know how much time they have left with Silas.

Christmas was especially heartbreaking. Silas should have been crawling through wrapping paper, stealing toys from his brothers, and filling the house with laughter. Instead, he watched quietly, trapped in a body he cannot control.

Despite unimaginable grief, Steven and Marijane are putting on a brave face for their older children, trying to keep life as normal as possible. Their extended family has stepped up in every way they can, but it is no longer enough.

How Your Support Helps

This family should not have to choose between being with their dying child and keeping their family afloat.

If you are able to donate, share, or support in any way, please know that it means more than words can express. Every contribution helps ease the weight so Steven and Marijane can focus on loving Silas and caring for their boys.

Thank you for standing with Baby Silas and his family during the hardest journey of their lives.

What Is 4H POLR3 Leukodystrophy?

4H POLR3 Leukodystrophy is an extremely rare, inherited genetic disorder that affects the brain and nervous system. It occurs when a child is born with mutations in specific genes (POLR3), which prevent the brain from developing and functioning properly.

This condition damages the white matter of the brain, which is responsible for sending signals throughout the body. As a result, the brain cannot communicate effectively with muscles or organs.

For children like Silas, this means:

There is no cure and no treatment to stop the progression of the disease. Care is focused on comfort, medical support, and preserving quality of life for as long as possible.

4H POLR3 Leukodystrophy is terminal, and life expectancy is tragically short. Families live with constant uncertainty, knowing that every day with their child is precious.

Because the condition is so rare, there is limited research, few specialists, and very little guidance for families navigating this diagnosis. Parents are forced to become advocates, caregivers, and medical coordinators overnight while coping with unimaginable grief.

This is why support matters. Families facing this diagnosis are not just fighting a medical condition, they are fighting exhaustion, emotional trauma, financial strain, and the heartbreak of loving a child they know they will someday have to say goodbye to far too soon.

*Both Becky Daniel (Silas' nana) and Marijane Bingham are co-organizers on this fundraiser. All funds raised will be in trust to Marijane and Steven.*