Mom’s blog chronicles challenges, joys, of raising a child with incredibly rare condition

Samuel Mann

LUTZ, FL (WFLA) — Like most children, 11-year-old Samuel Mann loves his iPad. But unlike most children, Samuel is one of only seven people in the world living with a rare genetic defect known as thanatophoric dysplasia, also known as thanatophoric dwarfism.

Infants with TD are usually stillborn or die shortly after birth from respiratory failure; however, a few affected individuals have survived into childhood with extensive medical help.

When Evelyn Mann and her husband learned of Samuel’s diagnosis, prior to his birth, there was little advice available. At the time, there were no known survivors.

“Most people think miracles happen to other people,” says Evelyn, adding “And you know what – before Samuel, that’s what I thought, too.”

Samuel received immediate breathing assistance when he was born, and was hospitalized for the first six months of his life. Once he was moved home, he needed around-the-clock nursing care. His parents celebrated his month birthdays, rather than celebrating his birthday in years. As Samuel grew up, Evelyn began blogging about his condition, providing that resource and insight that she and her husband didn’t have, as new parents of a special needs child.

“At the end of the day, I just don’t want any mom going through a challenge like this to feel alone,” Evelyn says.

Evelyn says she’s contacted nearly every day by families going through the pain of losing a child born with Samuel’s condition. But she’s also sharing the every day joys of motherhood, and that’s a universal reminder for every parent.

Looking through Samuel’s baby pictures, she pauses, then reflects.

“Even in the hospital he had that smile that takes your breath away. It takes my breath away.”

And Evelyn says, like any family, Samuel’s accomplishments – like learning to zip a zipper, or feed himself single Cheerios – are celebrated

“With my son’s milestones they may be more delayed than others, but I get excited about those milestones like anyone else does.”

Evelyn has published a book, “A Miracle in my Living Room,” a memoir of Samuel’s first six months of life. And she says she’s working on a second book, which will essentially be a guide for expectant parents of special needs babies.

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