Kaitlyn Evie

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Kaitlyn Evie : 

Kaitlyn Evie MPS IV Type A – Morquio Syndrome Tiny But Mighty!

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I was born on September 1, 2006.

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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.

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Just before turning 3, I was diagnosed with MPS IV, Morquio Syndrome.

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Morquio Syndrome is a very rare storage disease that primarily affects the bones.

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One trait of Morquio Syndrome is short stature… I will most likely grow to about 3-4 feet tall.

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Morquio Syndrome is a progressive disease, meaning it will get worse over time.

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I have been told to expect 30 – 40 surgeries and countless tests to keep a close eye on my development.

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Some surgeries I can expect are: neck fusion, hip replacements, and knee, wrist and ankle corrections.

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My life expectancy is anywhere from 20 – 60 years of age, depending on the progression of the disease.

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Due to the rarity of this disease, there is very little known about it.

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At this time, there is no cure for Morquio Syndrome.

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Clinical trials have begun in Europe and will be in the US by 2010. Hopefully, a successful treatment will soon follow.

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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.

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I know that my life is precious, and I don’t plan to waste any of it worrying when I can be enjoying!

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That’s why they call me, “Kaitlyn Evie, Tiny but Mighty.”