The SpecialMoms Parenting Magazine 1st Issue | Page 17

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Advocates Corner

Help Us Find
a Cure For

Juvenile
Dermatomyositis
(JDM) in 2014
by: Haley Ibrahim

W

e are very fortunate. Lucky even. We often

to win a big prize. Terrible odds, right? Might as

say that we have so much to be thankful

well head to the concessions and forget the

for because we have a very healthy sick child.

whole thing. Totally agree. Except, we did “win.”

Elia appears to be like every other 2-year-old. She

Our name was called and we didn’t want the

loves to sing, dance, run, blow bubbles, and her

prize. Want to hear what we won?

favorite color changes with the time of day. When
people meet her they often comment on her
outgoing and funny personality. In her mind, every

Since there’s no cure YET, we won a lifetime
supply of:

song deserves a boogie (or two), every flower

• A super immune system that doesn’t know

deserves a ‘niff, and every outfit needs proper

when to stop fighting and turns on itself

accessories. Her, and her little brother Zavier, add

attacking her skin, muscles, and potentially

so much happiness to our days.

every other system in her body.

And somehow, at just 2-years-old, she manages

• Dangerous sun sensitivity, which requires

to be all these things while fighting a battle

constant use of sunscreen, hats, and protective

that we can’t relate to or understand. Elia was

clothing.

diagnosed on May 22, 2013 at 22 months with
Juvenile Dermatomyositis (JDM). It’s an extremely
rare autoimmune disease that affects about
three in every one million children per year. How
rare is that?
Imagine if 15 professional football stadiums
were filled to capacity and three lucky fans were
picked at random out of everyone in attendance

• Medications that are harsh, unpredictable,
and cause other side effects that go beyond
the disease itself.
•

IVs, infusions, blood work, MRIs, strength

tests, swallow tests, school and work absences,
hospital stays, and fear and isolation during
cold and flu season.

Winter 2014 ~ The SpecialMoms magazine   17