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Written by Nine year old Holly Lindley has a serious inherited metabolic disorder called glycogen storage disease.
The disease prevents Holly from being able to use stored glucose as a form of energy and as a result the nine year old must drink 3.4 litres of milk per day mixed together with 5 tablespoons of cornflour just to stay alive.
There is no treatment for the condition so Holly has to drink the cold milk & cornflour mixture before bed to stop her falling into a coma. The cornflour contains starch, which acts as a slow release of energy during the night.
The Mail Online also reports that she has to regularly snack on chocolates and other sweets.
Her mother told the Daily Mail that it would be easier if she drank fizzy drinks that are loaded with sugar but she doesn’t like them so it has to be milk.
The Association for Glycogen Storage Disease describes it as,
A person with a Glycogen Storage Disease (GSD) has an absence or deficiency of one of the enzymes responsible for making or breaking down glycogen in the body. This is called an enzyme deficiency. The enzyme deficiency causes either abnormal tissue concentrations of glycogen (too much or too little) or incorrectly or abnormally formed glycogen (shaped wrong). Depending on the type of GSD a person has, their enzyme deficiency may be important in all parts of the body, or only in some parts of the body, like the liver or muscle. Typically, the forms of GSD are described by the part of the body that has trouble because of the enzyme deficiency. The categories most often are: the liver only, the muscles only, or both the liver and the muscles. Other systems that may be involved include blood cells (red blood cells, white blood cells, and platelets), heart, and kidneys amongst others.
There is hope that a cure will be found through research that is taking place at the University of Florida in the USA.
