My name is Carrie and my son, Matthew, was developing normally — walking, talking, and running — all up until his second birthday.  Out of nowhere, he started having seizures. We immediately took him to a neurologist and they did EEG’s & MRI’s to try and determine what was wrong with him.

Initially, the diagnosis was myclonic epilepsy, and we started Matthew on seizure medications.  These medications did not help Matthew and we started growing increasingly concerned.

A year later, we did a second MRI and found out that Matthew actually has leukodrostropy. Leukodystrophies, a group of rare genetic disorders, affect the central nervous system. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient.

Matthew is three now.  He cannot walk, talk, or feed himself, and the seizures are still really horrible. There is no cure yet for this rare disease.

I had never heard of this horrible condition called leukodrostropy until Matthew was diagnosed with it.

I hope people more aware of these heart breaking rare genetic conditions and will fight for treatments and cures.

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