KANSAS CITY, Mo. (WDAF) — Welcoming a new baby into the world is a life-changing experience.
For Nicole Bland and Joshua Webb, it was more like a miracle because their son, Josiah, was born with a rare genetic condition.
“My love for him is just unconditional. I look at him and just can’t stop smiling. He brings so much joy into my life,” Webb said.
But the joy was soon joined by feelings of fear and anxiety.
“When he was born, we were shocked. We didn’t know what’s going on,” Webb recalled.
“The first thing they said was, ‘I’m sorry, we don’t know what he has, and we don’t know how long he has to live,’” Bland said.
Josiah was born with his eyes set far apart, his ears smaller and his face abnormally shaped.
“When you have a baby, you know, the most precious joy is in your life at that moment, and I feel like that moment was crushed and taken from us,” Webb said.
But no one can take the love Josiah’s family feels for him, especially big brother Antonio.
“He’s 12, and when we explained to him that he had a baby brother and that he was special and he was different, he came up and saw him and he said, ‘Mommy, there’s nothing wrong with Josiah. He’s perfect just the way that he is, and I love him no matter what,’” Bland said.
When Josiah was born in September, doctors at Shawnee Mission Medical Center had never seen a baby like him before. He was transferred to Children’s Mercy Hospital, where he’d been monitored in utero and diagnosed him with Craniosynostosis.
But his parents soon found out that couldn’t be the case.
“So we went from him having a skull that fused too soon, to not really having one at all. So he has no top skull,” Bland described.
Dr. Bonnie Sullivanm, a pediatric geneticist at Children’s Mercy, explained Josiah’s rare gene pattern.
“Acrofacial dysostosis and that means some of the bones in the face and the head haven’t developed quite right,” she said.
Josiah is the only one in the world known to have his condition.
“The specific gene that causes this polar 1A, and what that means is there’s a spelling change in that gene that caused the bones of the skull to not form quite right,” Sullivan said.
“And he is the first one with the specific spelling change, which is why we think it was the skull bones, not the jaw, or the nose or the cheekbones that have been previously reported.”
Josiah is fed through a tube because he can’t swallow due to a weak gag reflex. He wears a helmet to protect his brain, but he can see and he can hear.
But because he is apparently the only one with his genetic condition, doctors can’t say what his future will be.
“You know, it’s a struggle every day. I pray and ask God to give me what to do because I don’t know. Every day I don’t know, and I just have to ask for his help because if I don’t, then I’ll be lost or I’ll break down,” Bland said.
She wants to tell her son’s story so his life will make a big impact in the medical field.
“They’ve already put him in the medical book, are going to put him down as the first person to have this gene,” she said.
And with every first that Josiah accomplishes, such as smiling, sucking a pacifier and clutching his toys — things he wasn’t expected to do — his parents consider themselves blessed no matter what the outcome.
“I always look at it like, ‘OK, God, you gave him to me for something, so guide me,” Bland said.
“He’s definitely a blessing, a blessing to all of us,” Webb said.
Specialists at Boston Children’s Hospital have been sent Josiah’s medical records with hopes that they’ll be able to get some answers.
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