Meet the Butterfly Boy

Dignum Daily

3/11/2016

Section: D-5

Authors Corner
By: Kari Dignum
This Story inspires me
because it reminds me
to be thankful for my
many blessings and
that even when life

Jonathon Pitre: an inspiration to all, spreads awareness

on rare skin disease

gets hard, having an

optimistic attitude
makes a positive
impact on your life

Fourteen-year-old Jonathan
Pitre from Russell Canada, has
a severe case of Epidermolysis
Bullosa (also known as
Butterfly Children) which is a
rare skin disease that causes
the skin to tear off at the
slightest of touch (like that of
a butterflys wing). Currently
there is no cure for this disease
because it isnt a common
disease. Furthermore, due to
the fact that this causes such
fragile skin, most people with
of Epidermolysis Bullosa die
from skin cancer in their early
twentys.
Pitre, was born seemingly
healthy because symptoms for
this disease did not begin until

Jonathon was 1 year old.

When tearing of his skin
occurs, Jonathons skin looks
similar to third degree burns.
Not only does this look
unpleasant, it causes Jonathon
relentless discomfort.
Although this condition
constantly inflicts pain on
Jonathon, he continues to
show a brave face and more
importantly, a positive
attitude. This past November,
Jonathon spoke about the
need to start a national rare
disease strategy at a forum
featuring the Economic Club
of Canada. Pitres devotion to
finding the cure of
Epidermolysis Bullosa is truly
inspiring and is definitely a
story worth sharing

Were here today to try to make everyone

understand just how tough it is out there for people
with rare conditions, Pitre, 15, told an Economic
Club of Canada forum designed to highlight the
need for a national rare disease strategy.

and the lives of those

around you.
Furthermore, Jonathon
shows that your age
does not limit the
amount of impact you
can have on the world.

Other Facts
About Jonathon:

Hopes to one day

dance under the
Northern Lights

Favorite NHL is the

Ottawa Senators

Gave a speech at
We Day in front of
17,000 students

Featured in
documentaries on
several TV
Channels

Works Cited

Duffy, Andrew. For Jonathan Pitre, Its Been a Huge Journey. Ottawa Citizen. Post
Media, 30 Dec. 2015. Web. 1 Apr. 2016. <http://ottawacitizen.com/news/localnews/for-jonathan-pitre-its-been-a-huge-journey>.

Duffy, Andrew. Jonathan Pitre Appeals for Rare Disease Research and Funding.
Ottawa Citizen. Post Media, 9 Nov. 2015. Web. 9 Mar. 2016.
<http://ottawacitizen.com/news/local-news/jonathan-pitre-appeals-for-raredisease-research-funding>.

Griffiths, Sarah. The Butterfly Boy Whose Skin is so Fragile it Tears Away at the
Slightest Knock Leaving Painful Blisters. Mail Online. Daily Mail, 3 July 2014.
Web. 9 Mar. 2016. <http://www.dailymail.co.uk/health/article-2679437/Thebutterfly-boy-skin-fragile-tears-away-slightest-knock-leaving-painfulblisters.html>.