Haley Fights Pompe Disease

In June 2006, Haley was diagnosed with Infantile Onset Pompe Disease.
Infantile Onset Pompe Disease is a genetic disorder that affects the heart and muscles and without treatment is fatal before the age of 1.
A new treatment, Myozyme, was approved by the FDA in April 2006. The medicine helps to slow down the progression of the disease.
Please see "Pompe Disease" on the left for more information about this disease.
Haley is 3 years old and making progress. She wants to crawl, but at this time she "scoots". After a year of not being able to eat, Haley is now able to eat food. However, she is not used to eating, so she is slowly tasting different foods. She receives her nutrition through a G-tube. She receives her infusion of Myozyme weekly at this time. For more info, please read Haley's Journal.

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http://www.helpinghaley.com/advancedguestbook

A poem written for Haley:

Little one so beautiful, with angels 'round about.

Prayers reach out to heaven, a most loving shout.

And the good Lord hears them, each and every one.

Voices joined together, for you, little one.

Some things are hard to understand, but we will one day.

When all the pain and suffering, goes along the way.

I'm talking to Jesus, He hears my every word.

All the many prayers, His loving heart has stirred.

He'll reach down and touch you, even dry your tears.

Reaching 'crost the very sky, and across the years.

He will give you hope and peace, that only He can.

And He has been with you, since your life began.

There is so much trust, in your tiny heart.

You know that you and He, have never been apart.

So I will call upon Him, with my heart and soul.

To take you in His loving arms, and to make you whole.

Knowing in whatever way, He chooses this to do.

The One who loves the children most, in love does for you.

Johnnie Baum

This website is to provide awareness of Pompe Disease and to provide information about Haley's progress.

cajun heritage