Parents began praying after son is born with condition where he can’t be hugged.

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Parents began praying after son is born with condition where he can’t be hugged.

When Patrice Williams gave birth to her son Jonah in 2009, she knew something was wrong.

Her baby was missing skin on his lower extremities, and he had purple blisters all over the body. He looked like a burn survivor in a fire. Even holding him, she could tell he was in pain.

Doctors told Patrice and her husband Matt had epidermolysis bullosa, a potentially fatal skin disorder where proteins that keep skin attached to the body are missing. Jonah’s skin is very fragile and any friction causes blisters, cuts and tears. Even a snuggle could be dangerous to someone with the condition. Some kids grow out of it, but others die from infections from cuts and wounds in the skin.

The news devastated the couple, who had already lost one son. But they fought hard for Jonah, who spent over a month in the NICU with his skins covered in ointments and bandages. The family eventually learned how to change the baby’s dressings everything, and eventually they took Jonah home.

It wasn’t easy for the family. Jonah was just a baby and wouldn’t stay still, making changing his dressings a three-hour process. Bathing him required both Matt and Patrice to help out.

They also worried about Jonah’s food intake, since most of his nutrition went to healing his blisters instead of growing. They eventually had to get him a gastronomy tube to make sure he got adequate amounts of nutrients everyday.

Thanks to his family’s dedication, Jonah began to thrive, and life became more manageable, as he’s learned to participate in his own care. He’s become a normal kid, as well, one who loves to play and run.

He still has challenges with his skin — a simple fall can take his skin right off, creating massive cuts and blisters. But despite his challenges, he still barrels forward in life.

See Jonah’s story below, and learn more about an intrepid, tough, spirited boy with a rare condition and a courageous spirit…






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