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

Living with Glycogen Storage Disease
We always have to be aware of the amount of energy Kayla and Liberty expend and make adjustments in their cornstarch and keep food with us. We don’t socialize with other families much either. Kayla and Liberty do have some great friends with very understanding parents. They have had to learn to make sure they have food on hand that the girls can eat and that they need their starch on time. Some of their friends' parents understand that they have to be hooked up to their machines at night and they still have allowed the girls to come over for sleepovers.

Through the years we have been through many different treatments. The initial feedings the girls were on after they were diagnosed was the wrong type of formula which caused their livers to enlarge even more. They drank their cornstarch with milk. (I know your thinking MILK, NO!) The doctor we were seeing at the time did not know much about GSD and the dietary restrictions. She just told us to restrict table sugar. But I did some research and found out that there was more to it than table sugar so I tried to make the dietary modifications on my own. We changed doctors when the girls were about 4 and 6 and found out that the dietary restrictions were much more than we had originally thought. This doctor took them off of overnight feeds and increased their cornstarch doses and told me to give them cornstarch at night in double doses to keep up their glucose levels and that the overnight feeds were causing more problems that good. This treatment went on for years. But their blood sugars were never very well managed with this treatment and their triglycerides, cholesterol, and lactic acid levels were through the roof. When Liberty was 6 we finally had the G-Tube removed (it was not a mic-key). It had to be removed surgically because it had never been changed since it was originally put in. It was a horrible experience. They tried to just deflate the balloon and pull it out but it broke inside of her and she screamed in pain like I had never heard before. They then sent us home with the part of the G-tube still in her and told us she would pass it and the hole from the g-tube would close on its own. It didn’t. It was about 2 months before the doctors decided that the hole wasn’t going to close and the remaining piece was not going to pass. So she went into surgery to have that part removed and to have her hole in her stomach closed. After the surgery she was in ICU for a while because she did not wake from the anesthesia and could not breath. Because of her liver problems, her body could not clean out all of the medication that was given to her to put her down. It was a very scary time.

We moved in 2001 to the Atlanta, GA area and they started seeing a new doctor. She continued their treatment pretty much the same as it had been but changed their cornstarch doses. This also didn’t help enough with managing their GSD and it was noticeable that both of the girls’ growth was very retarded and not improving. Especially Liberty’s, she was still wearing toddler size clothing when she was in first and second grade in elementary school. So I searched for another doctor. We went to an endocrinologist about Liberty’s growth and they wanted to put her on injections but they couldn’t promise it would work. But I told them no she had already gone through enough.

We then found another GI doctor and she tried to watch the girls labs but didn’t do much else. She constantly stressed that we needed to manage their cornstarch and diet better but we were doing everything by the book. She wanted to put them on overnight feeds which meant g-tubes again and I protested and told her no way. We then started seeing a dietician and geneticist who also said the girls would improve dramatically with g-tubes and overnight feeds. After months of their prodding I finally gave in. On October 7, 2005, Kayla and Liberty went in for surgery to have g tubes placed. It was like Hell for me. They went in one after another. First Kayla went back then Liberty. All I could do was wait. They finally told me Kayla was OK and that they were moving her to her room. Then I was torn. I wanted to be with her but Liberty was still in surgery. The nurses told me they would let me know as soon as Liberty was done and that it was OK to go to the room with Kayla. In Kayla’s room I sat and looked at her thinking why did I ever agree to this. She was in pain and that hurt me. Over an hour later, the ICU called and told me Liberty had been out of surgery for a while but they were having problems with her breathing. Again all I could think was what have I done!! About 30 minutes later Liberty called Kayla’s room. She sounded weak but she was talking and wanted me. The nurse got on the phone and said she would be bringing her up soon. Kayla and Liberty were in separate rooms. We had never been through that before! Everytime they had both been in the hospital, they had both been in the same room. Luckily, we had support and their father was there. We took turns staying in each of the girls rooms. Surprisingly, Liberty was up and moving much faster than Kayla.

Since then, both of the girls have been hoping this new therapy would work. Unfortunately, it isn’t doing what we had hoped. Kayla’s labs have improved some but not much and Liberty’s have not improved at all. At a recent appointment they told me that the girls, especially Liberty, was a high risk for a heart attack or stroke. So I asked again about Liver transplants. The geneticist said that he would let me talk to the transplant team to see what they thought about a transplant for Liberty.

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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