2018-04-04 Minnesota, USA / Butterfly Child / Schmetterlingskind / Criança Borboleta / Niño Mariposa

When he was born, late on the evening of June 2, 2000, Jonathan Pitre was perfect: There was not a blemish on him. Early the next morning, however, a doctor, puzzled by the blisters that had developed on his fingers, ordered him transferred to the Children’s Hospital.

En route, Jonathan stopped breathing as his throat closed with blisters and swelling. An emergency intubation saved his life. For the next month, he was in an incubator as doctors investigated.

Jonathan was ultimately diagnosed with recessive dystrophic EB, a severe form of the disease that causes the skin to blister, shear and scar. Those with the disease are known as ‘Butterfly Children’ because of their fragility.

The family would later learn that Jonathan’s EB was the product of a random mutation: a terrible turn on the genetic wheel of fortune.

At times during his life, Jonathan wondered about the purpose of his daily struggle. In 2012, he found an answer to that question at an EB conference in Toronto organized by DEBRA Canada. It was the first time he had ever met other children with the same disease.

I think that was a turning point in my life. Before that, I didn’t really have meaning in my life. I didn’t know what I was here for … I came to understand that my role in life was to help people with EB.

Jonathan became an ambassador for the charity and dedicated himself to the cause of raising Awareness. Jonathan’s decision to show the world his pain fuelled an extraordinary response:

Donations flooded into DEBRA Canada – more than $200,000 – and his story went viral. TSN, ESPN, People Magazine, USA Today, The Huffington Post, the Daily Mail and dozens of other media organizations interviewed him.

Jonathan fought for every minute of happiness, every hour of normalcy. In hospital, he told doctors in his plain, forceful way that during the day, he would rather endure pain than be muddled by opioids.

Jonathan had entered the University of Minnesota Masonic Children’s Hospital when he spiked a fever. He had been battling a skin infection that resisted antibiotics for three weeks.

Yet there was no reason for alarm since he had suffered a series of similar medical issues. Jonathan’s blood pressure dropped, but he was still eating and in good spirits.

The following day, his blood pressure dropped again and doctors treated it with dopamine. Jonathan deteriorated further. His breathing became laboured, and doctors struggled to reverse the advance of sepsis, a condition that results from the body’s runaway response to an infection.

Jonathan was moved to the intensive care unit to support his breathing, but one crisis followed another. His lungs filled with fluid and his kidneys failed. He was revived once when his heart stopped. But he still required emergency dialysis.

Unwilling to watch her son suffer anymore, his mother had Jonathan brought back to his hospital room where he had spent much of the past year. She tucked him into bed with his favourite blankets.

He died at 8:28 p.m.

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