Presentation Transcript
Kaitlyn Evie :Kaitlyn Evie MPS IV Type A – Morquio Syndrome Tiny But Mighty!
Slide 2:I was born on September 1, 2006.
Slide 3:When I was
18 months old,
my parents took me to the doctor for my knock knees, which is when they discovered several abnormalities throughout my whole body.
Slide 4:Just before turning 3, I was diagnosed with MPS IV,
Morquio Syndrome.
Slide 5:Morquio Syndrome is a very rare
storage disease
that primarily affects the bones.
Slide 6:One trait of Morquio Syndrome is short stature…
I will most likely grow to about
3-4 feet tall.
Slide 7:Morquio Syndrome is a progressive disease, meaning it will get worse over time.
Slide 8:I have been told to expect
30 – 40 surgeries and countless tests to keep a close eye on my development.
Slide 9:Some surgeries
I can expect are:
neck fusion, hip replacements, and knee, wrist and
ankle corrections.
Slide 10:My life expectancy is anywhere
from 20 – 60
years of age, depending on the progression
of the disease.
Slide 11:Due to the rarity of this disease, there is very little known about it.
Slide 12:At this time,
there is
no cure for
Morquio Syndrome.
Slide 13:Clinical trials have begun
in Europe and will be in the US
by 2010. Hopefully,
a successful treatment will soon follow.
Slide 14:I have been given
a challenge
that I didn’t ask for, but I will take it
and become a better, stronger person because of it.
Slide 15:I know that my life is precious,
and I don’t plan
to waste any of it worrying when I can be enjoying!
Slide 16:That’s why
they call me, “Kaitlyn Evie, Tiny but Mighty.”