Anyone with a chronic illness knows how devastatingly difficult it can be when complications arise. In his eight years of life, Guilherme has come to understand this well. He has epidermolysis bullosa dystrophica, a rare hereditary disease that affects the skin. Because his skin is so fragile, he’s prone to getting blisters from even the smallest of injuries. To ensure he stays safe, he requires lots of care, something both of his parents are more than happy to give him.
Guilherme has been hospitalized 23 times and has undergone eight operations in his life, so he’s no stranger to being in the hospital. Still, nothing could have prepared him or his family for his latest visit. Rather than having an issue with his disease, he was struggling with pneumonia triggered by a cold. The illness escalated, and his lungs struggled to the point that he had to be intubated.
As you can imagine, having your child put into a coma is emotional for anyone, but it was all the more anxiety-inducing for Guilherme’s parents. His Mom, Tayane Gandra, would stay by his side every single day, hoping and praying for the day he’d be able to wake up. One fear of Tayane’s was that her son’s frail body would not be able to handle getting inundated.
“I was very afraid that he wouldn’t come back,” Tayane said. “That he would be intubated and not survive.”
For 16 days, Tayane made sure to be by her son’s side every moment that she could. Then, one day, she decided it would be best to go home and sleep. After a while, she got a call from her husband… and it was the one she had been waiting for. Not only was Guilherme awake, but he was calling out to see his Mom.
“When I received the video from Gui’s father, Estevao, telling me that he had woken up after such a long time sleeping, I was desperate,” she recalled. “I wanted to teleport myself to the hospital. I came running. I did everything to get here as quickly as possible, and when I entered the room, it was incredible.”
As soon as Tayane stepped inside, little Guilherme burst into tears. She swiftly closed the distance between them, and the two of them shared a long-awaited embrace. There wasn’t a dry eye in the room.
Although his disease presents so many unknowns in his life, Guilherme and his family find strength and hope in their faith, something that was especially true during those harrowing 16 days.
“Guilherme is a very strong boy,” Tayane said. “A child of great faith, who has hope for better days.”
Watch Tayane and 8-year-old Guilherme’s tearjerking reunion in the video below.
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