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With an Organ Impairment and Five Hospitalizations Due to Glycogen Storage Disease Type 1A, Landin Waits To See A Liver Specialist


A rare genetic metabolic disorder centered in the liver, Glycogen Storage Disease can cause low blood sugar, an enlarged liver, failure to thrive, developmental delay, elevated lactate and uric acid levels in the blood and urine, and seizures.

Landin was born on June 15th 2010. It  was an amazing day, yet even at that time, we knew something was wrong. We immediately noticed he was breathing very fast and hard.

They sent him to the neonatal intensive care unit (NICU), and the doctor said his labs came back and that his liver enzymes were elevated and his acid levels were also very high. They sent several tests all over the United States to see if anyone knew the cause, and the results were the same – no one knew. After 10 days of being in the NICU, all of the labs changed to normal; they figured it could have been an infection he got during my pregnancy.

He lived a normal life for six months, until the day we went in for a check-up at his primary healthcare provider. His doctor was very concerned about the size of his belly and decided to send us back to the genetic specialist in Tulsa, Oklahoma. The specialist did several tests, and all of his labs were out of wack, so he wanted to do a liver biopsy to confirm what was going on. The liver biopsy was done May 2011; when the results came back, it confirmed our fears.

Landin was diagnosed with Glycogen Storage Disease Type 1A, an inherited disorder caused by the build-up of a complex sugar called glycogen in the body’s cells. The accumulation of glycogen in certain organs and tissues, especially the liver, kidneys and small intestines, impairs their ability to function normally. This has prevented him from obtaining any fructose or sucrose, which is found in table sugar, fruit and most anything. This disease has caused him to be hypoglycemic in order to keep his sugar levels from dropping. He has to have five doses of cornstarch a day, and he consumes around three tablespoons, five times a day. Even though the cornstarch works during the night, he can not keep his blood sugars normal at night. So on June 26th 2012, he got a a mic-key button placed in, so we could regulate his sugars at night. He has been placed in the hospital five times in the past six months.

As of right now, Landin is waiting to be seen by a liver specialist to talk about getting on a transplant list. He is our fighter, and he is our will to keep going.

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  1. Andrea says:

    How can I contact him. Does he have a treatment ready?

    1. Heather Earley says:

      Andrea, if you are referring to Landin – We are happy to share your information with the family. Let us know.

      - The Global Genes Team

  2. Collene says:

    Please contact Dr. Weinstein. There is NO need for a transplant if this precious baby receives proper treatment. Children are living healthy lives now.

  3. Amy says:

    I’d love to speak with this family. We are also in Tulsa and have 2 young boys with type 1a.

  4. Michael says:

    Don’t do it. Contact Dr. Weinstein at the University of Florida. Our son has 1a.

    1. M says:

      Michael is right. There are hundreds of GSD children and adults living normal lives. That is possible with proper treatment.

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