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

After Diagnosis
Liberty was about 11 months old and Kayla was nearly 2 years old when they were diagnosed. They were initially admitted to the hospital as “Failure to Thrive” and I was watched like a criminal. It was absolutely horrible. Their father (at that time he was my husband) was in the Army and was stationed at Fort Polk, LA. When the doctors there could not determine the reason for their failure to thrive, they sent us to Brook Army Medical Center at Ft. Sam Houston in San Antonio, Texas. My girls were inpatients at BAMC (Brook Army Medical Center) for about a month. During that time I lived at the hospital sleeping in a chair between my children’s cribs. They were kept on IV fluids and were tested for everything under the sun and while their father and I were watched like hawks. We were young parents I was only 20 and he was 24 so that added to the suspicion that we were lacking adequate parenting skills. Both of the girls had liver biopsies that were sent to Duke for further analysis and Liberty went through surgery for a Nissen Fundoplication and had a feeding tube placed. I was trained on how to use and change out Kayla’s Nasogastric feeding tube. They remained in the hospital a while longer to heal and wait for a diagnosis. When they came back with the diagnosis of GSD 1a my heart broke. We had no idea that our two little ones were so ill. All I had known prior to all of this was that they were always hungry.

Once they were diagnosed the physicians no longer scrutinized us as parents but instead commended us. I was a strong believer that a child will tell you when they are hungry and that they did not need to be on a schedule. So I had always fed these two way too much in everyone elses eyes. They both loved pastas and ate a lot of that as well. Because I did not EVER restrict food they were ALIVE and had no brain damage or other long term affects from being diagnosed so late in the game. Looking back I think of the foods they craved when they were young. They always craved starchy foods. I think it’s amazing how your body will tell you what you need when you need it.

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

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