Liberty's Story:
The story you are about to read are words directly from Liberty's mother. To help Liberty please click here.

Pre Diagnosis

Prior to them being diagnosed life was relatively normal or at least I thought it was. They ate a lot. Nearly constantly but were not overweight. When Kayla was born, she was taken straight to the NICU (neonatal intensive care unit) she couldn’t keep her temperature up, her blood sugars were off and she had a heart problem. They got her temperature up and blood sugars level but found a Ventrical Septical defect in her heart. (basically this means she had a hole in her heart) I was terrified! I stayed at the hospital and would not let them discharge me until she could come home. We thought she would need open heart surgery to close the hole but luckily it ended up being something that would close on it’s own. It was a terrifying experience but she was going to be ok according to the doctors. She developed on time and grew like she was supposed to so I really thought she was ok. Kayla didn’t start walking till she was nearly 2 because she could not get her balance since her tummy was so big. I had been taking her to the military pediatrician and they said not to worry she would walk when she was ready.

Liberty had the same problems with blood sugars and her temp when she was born and again I went through the fear that my child was not ok but they were able to send her home within a little over a week and gave her a clean bill of health. She also developed normally and was meeting all of the expected milestones.

After Diagnosis

Family Impact

Living with Glycogen Storage Disease

Pursuit of a Transplant to Change & Save a Life

An Interview with Liberty

Liberty's Daily Intake Compared to that of a Child without Glycogen Storage Disease

Help Liberty

Photo Gallery of Liberty

Back to Main Story