Skip to main content

Boy with extremely rare skin condition dies at U of M hospital

Jonathan Pitre was just 17 years old.

A boy afflicted with an extremely rare and painful skin disease has sadly died from complications following treatment at the University of Minnesota.

Canadian Jonathan Pitre had been dubbed the "butterfly child" because of the sensitivity of his skin was akin to a butterfly's wings, CBC reports.

It was the result of a condition called epidermolysis bullosa (EB), a little known disease that people are now becoming aware of because of his brave battle.

On Friday, his mother, Tina Boileau, confirmed that her son had died at the age of 17.

"Jonny’s story has been made very public over the last few years as he invited you into his life and his daily struggles with EB as he tirelessly fought to raise awareness for this horrific disease," she wrote on Facebook. "I am proud to say you did it Jonny boy!

"Thank you for your outpouring of love and support for Jonathan and myself in these sad times. My family and I are now requesting your understanding in respecting our privacy as we reunite as a family to support each other in the challenging days ahead as we grieve the loss of our son, brother, grandson and above all a fearless warrior."

Related:

– Sign up for our daily newsletters

He was being treated at the University of Minnesota Masonic Children's Hospital, where the Ottawa Citizen reports he underwent a stem cell transplant last April in an attempt to halt the disease's advance.

The newspaper says that Pitre suffered a series of complications and medical issues in the wake of the transplant, which was preceded by "intense" chemotherapy and radiotherapy.

The U.S. National Library of Medicine says EB is a group of genetic conditions that cause the skin to be very fragile and blister easily, with skin erosions forming from minor injuries or scrapes, such as rubbing or scratching.

The U of M is the world leader in offering therapy for EB, conducting experimental clinical trials on sufferers that includes stem cell therapies and bone marrow transplants.

Next Up

Eric Reinbold

Reinbold guilty of murdering wife with 'particular cruelty'

Eric Reinbold, 46, was convicted of two counts of murder in the second degree in Pennington County Friday.

police tape

Armed assault suspect arrested after standoff in Waite Park

The standoff ended early Saturday when officer obtained a warrant for the home.

Screen Shot 2022-10-02 at 9.06.25 AM

3 dead after plane crashes into house in Hermantown

Two people in the house were uninjured.

FeDh7pUWAAg3NMd

Destructive fire at Maple Grove greenhouse and nursery

The fire burned early Sunday morning at a longtime Maple Grove greenhouse and nursery.

st. cloud state university hockey

SCSU player hospitalized after being taken off ice on stretcher

Luedtke was checked into the boards in the first period and down for a reported 10-15 minutes.

Amber alert wisconsin

Amber Alert in Wisconsin: Search for missing 15-year-old girl

Police believe 15-year-old Kryssy King may be with a 22-year-old man.

Screen Shot 2022-10-01 at 10.18.12 AM

3 St. Paul fast food restaurants robbed in space of an hour

The thieves struck between 7:15 p.m. and 8 p.m.

Screen Shot 2022-10-01 at 9.06.40 AM

What to do with the Kmart site? Minneapolis wants your ideas

The project will connect Nicollet Avenue south of Lake street and north of the Midtown Greenway, reestablishing a street grid.

Screen Shot 2022-10-01 at 7.53.55 AM

Crowd evacuated at end of homecoming football game in Brooklyn Park

Police blamed 'unruly teens' in the stands and some who were trying to enter the stadium.

gas

State to help 44 Minnesota gas stations add E15 pumps

The yellow 88 button is coming to more gas stations in Minnesota.

Related

Twin Cities teen who died on flight home from college had undiagnosed heart condition

Former MN high school student Griffin Gutwa was just 18 years old.

The boy who was hit by a snowmobile on a Minnesota lake has died

The 8 year old and his father were putting up an icehouse when they were hit.

lake water

Boy, 14, hospitalized after water emergency dies

It happened northwest of Duluth on Tuesday.

An extremely rare Prince album sells for $15,000

Most copies of the album had been destroyed, but one of the few survivors was sold on Discog last year.

Woman's death in hot tub ruled accidental

The 53 year old was found unconscious in a 15th floor hot tub.

U of M worker charged with possessing child porn

The 28 year old is an IT specialist at the U's psychology department.