Please sign our guestbook! Click on the link below!

Welcome to our page. Here you will read about a precious girl, Haley, who was diagnosed

with Pompe Disease in 2006. It is my mission to educate people on this rare and deadly

disease.

My goal is to start a non-profit organization that will help those with Pompe Disease, as

well as their families. Having Pompe Disease, or a family member with the disease, is very

financially draining. Over the last few years, we have been lucky enough to help other families,

mostly because of our community and fundraisers for Haley.

We hope that with a non-profit, we will be able to have access to more funds, and thus help many

more families. We also hope to assist with funding for research as we hope and pray for a

cure for Pompe Disease in Haley's lifetime.

If you are interested in helping with this endeavor, in any way, please contact me, using the link to the left

Please read on about Haley and Pompe Disease!

Haley, 5 years old

May 2008 July 2007

Haley in June 2006 Haley in March 2007

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 5 years old and making progress. She is unable to walk or stand, but is slowly getting stronger after having surgery July 2010.. 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.

Please sign our guestbook!

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