Desiree: Much More Than Joubert Syndrome


Desiree had Joubert Syndrome.

Malformed brain stem. Extra fingers and/or toes. Rapid or decreased breathing. Cleft Palate. Lack of balance and coordination. Abnormal eye movements. Liver disease. Kidney Disease. Low Muscle tone.

These things tell you about some of the symptoms of Joubert Syndrome. But what that doesn’t tell you is how much love she brought to everyone’s life.

It doesn’t tell you about how the singer Jack Johnson relaxed her whenever she heard his songs or how much she loved to watch Finding Nemo. It doesn’t tell you about how she loved to swing at the park or laugh whenever we would dance around my living room in tutus.

On July 19th, 2013, she passed away.

With her passing, Joubert Syndrome went as well. But these memories did not. There is not a medical diagnosis that can tell you about all the love she brought to everyone’s life. There’s no physical therapist or medical professor that can attempt to measure what the worth of life was and would have been. They can give you facts about her body but they couldn’t even begin to give you facts about her personality, about her soul. She had a light that radiated out of her and into every person she ever met. Despite the differences between her and others her age, she still smiled.

She always smiled.

And that fact alone is enough to give me hope for the rest of my days.

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Global Genes Comments

  1. Jeremy Hamilton says:

    My daughter was just diagnosed with Joubert thank you for the encouraging words

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