Haley’s Story

Haley’s Story

November 2021 My name is Haley Hayes. I am from Virginia. I am 16 years old and was diagnosed with infantile-onset Pompe Disease at 6 months old.  I will be sharing my experience being a teenager living with Pompe and how it has affected me over the years. In the...

Caitlin’s Story

Caitlin’s Story

August 2021 My name is Caitlin Naldoza. I am 17 years old and was diagnosed with late onset Pompe Disease at 5 years old. I will be sharing my experience being a teenager living with Pompe and how it has affected me over the years. In middle school, that was when I...

JOHN’S STORY

JOHN’S STORY

A year ago today [April 29, 2004] our son, John, passed away from Pompe Disease.  He was four years old.  Most of you will not recognize his name, but you all should know who he is.  John was patient 101 – the first person to receive the CHO Enzyme Replacement Therapy...

PATTY’s Story

PATTY’s Story

A Mothers Anguish April 6, 2002, was the saddest day of my life. Senselessly, while in the care of an inept medical system, my wonderful daughter passed away. Her name was Patty. Everyone, especially the medical profession, should be aware of the potential for this to...

STACY’s Story

STACY’s Story

This is the story of me from before I was diagnosed with Pompe’s disease.  I hope this helps to enlighten the medical community as well as other Pompe patients. Back in 1965 my Mom was told that I would be born on December 2nd.  This date came and went and the...

LUCAS’ Story

LUCAS’ Story

Our son Luke, the youngest of four children, was diagnosed with Pompe’s Disease at 5 months of age. He had a very normal birth and development but was a floppy baby. Luke was first hospitalized at 6 months of age with RSV virus and pneumonia after which he was...

TRAE’s Story

TRAE’s Story

I was diagnosed in 1991 at age 22 with AMD. I also have a sister who is severely affected by the disease. She was diagnosed 13 years ago at age 20. In college, I began to notice that it was getting difficult to walk upstairs. I would get very winded, and my muscles...

TIFFANY HOUSE’s Story

TIFFANY HOUSE’s Story

December 2004 Several months ago, I was given the opportunity to write a paper about an experience that changed my life. I wrote about being diagnosed with Pompe’s disease. I found that writing about my experiences was a good experience for me. To read this paper,...

ROBIN’s Story

ROBIN’s Story

At 16 years of age, Robin was an accomplished violinist and had just won a major regional competition when she came down with flu symptoms. Severe fatigue and weakness followed, and she could no longer attend school. A year later she was finally diagnosed with AMD....

THOMAS’ Story

THOMAS’ Story

Hello everyone. My name is Jill, and I have a story to tell about my amazing and fearless son, Thomas. Thomas was born on Sept. 6, 2002. His trip was less then smooth. Although he looked like a beautiful and healthy 10lb 9oz baby boy, he had some problems with his...

HILLARY’s Story

HILLARY’s Story

I was diagnosed with Pompe in my mid-20’s after losing weight for several years.  I am now in my early 30’s and feeling better than I was when I was diagnosed. I had a typical childhood.  I swam on the swim team during the summertime, and during the school year, I...

GEORGE JACOB THOMAS’ STORY

GEORGE JACOB THOMAS’ STORY

George Jacob Thomas, age 14, is suffering from GSD Type 2, Pompe. We reside at Trivandrum, Kerala State, India. Symptoms of Pompe were evident in George’s case when he was 7 years old and his condition progressed over the years. Diagnosis took quite a few years since...

KAIA MESSINA’S STORY

KAIA MESSINA’S STORY

On January 3rd, 2010 I gave birth to a beautiful healthy baby girl weighing 7 pounds. We took Kaia home a few days later and for the first 3 months of her life she was a normal baby – gaining weight, feeding well, kicking her legs, laughing and cooing. At about three...

Phoenix UPDATE: 2-2-2021

Phoenix UPDATE: 2-2-2021

Phoenix UPDATE: 2-2-2021. Wow! That’s was a long time ago, BUT, Luckily, we are still here! Phoenix is now 18 years old, and while we loved him being able to push his chair around the house he can no longer do that. He actually isn’t really even strong enough to...

PHOENIX’S STORY – (AN INFANTILE-ONSET PATIENT)

PHOENIX’S STORY – (AN INFANTILE-ONSET PATIENT)

Phoenix was born July 18th, 2003. I remember reading his APGAR test and the words of the neonatologist were “strong” however, I couldn’t tell if he was referring to his heart or his muscles. At any rate, he showed no sign of any serious problems other than the fact...

WE NEED YOUR HELP!

To further research into Pompe Disease, as well as support Pompe patients around the world, private funds must be raised. If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:

AMDA (Acid Maltase Deficiency Association)

P.O. Box 700248
San Antonio, Texas 78270-0248
Phone: 210-494-6144
Email: info@amda-pompe.org

 Acid Maltase Deficiency Association

GET INVOLVED

Your generous contribution will go a long way into improving the quality of life of Pompe Disease Patients worldwide. Donations go towards Pompe Disease Research.

If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:

(210) 494-6144

info@amda-pompe.org

AMDA

PO Box 700248

San Antonio, Texas 78270 USA