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

Pursuit of a Transplant to Save & Change a Life
Since the day they were diagnosed I was told that transplants were not an option. I had asked every doctor we had ever seen and they all said that a transplant was not a treatment for this disease. But what I had read had been the opposite. I had read of children in other parts of the world having transplants and doing quite well and of children having transplants in the US and some did well and others didn’t but that meant that is was an option. I couldn’t understand why it was never an option for my girls. The original meeting with the transplant director was an eye opener. He explained the risks and the life long medications. We talked about Liberty’s platelet problems and her bleeding disorder. At that point he sent me home to think and learn more about transplants. He contacted Liberty’s hematologist to make sure she could make it through such a major surgery. I received a call several weeks later from him telling me that she was a transplant candidate and that I should call him if we want to proceed with the surgery.

Several months went by as I weighed the pro’s and cons of a transplant. While I was trying to make this decision, Liberty’s labs were getting worse and her life more fragile. But looking at her you couldn’t tell. She was still the same bubbly kid always active both socially and physically. Her grades were still all A’s and B’s. She was sick but she has always been sick. That’s why I couldn’t see it. She was just getting worse. So I made the follow up appointment with the transplant team and told them that we were ready to move forward. This was not done half baked I had done my research. And there were more positives than negatives.

This transplant will cure all of her GSD related symptoms. Completely! It should cure her bleeding problems because they are due to her liver problems. A side effect of the anti-rejection medication is that she will no longer have allergies and skin rashes. She will have the best chance for catch up growth after the transplant. She has a high chance of only having to take 1 medication a day after the first yr post transplant. In comparison to cornstarch every 4 hours and overnight feeds that’s a huge plus. She will not have any diet restrictions other than salt and fat intake. She won’t have a feeding tube anymore. As an adult she can still have children. Her quality of life will be much better. The cons are: it’s major surgery and I know that her history with surgeries has not been good. She will have to take medication the rest of her life. (but she already has to do that) the cost of medications and the surgery are very high. She will be out of school for months and she will have to be in a relatively sterile environment. She will have to learn to avoid places where she could be subjected to large amounts of germs. She can’t take any live vaccines because of her weakened immune system. She will have another large scar which is a big deal to a young teen. She can never be without medical insurance because of her constant medications and medical follow-up. Rejection is a possibility. BUT she will be cured of GSD completely and will be able to eat & grow like a normal child.

Even though Liberty is covered by 3 different health insurance companies, including Peach Care for Kids, we find ourselves lacking funds to cover the care this surgery requires. The scariest thing is waiting for the final company to agree to the surgery. Precious time is wasting by while we wait for this approval. Until this approval happens or we show we have the funds to pay for this surger, Liberty remains off of the transplant list. This is why we find ourselves where we are today. Trying to raise money. This also made us aware of how many people find themselves in the same position. This knowledge is leading us to build a non-profit agency that will help children like Liberty pay for transplant surgery and care.

An Interview with Liberty

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

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