When Luxton was born, he wasn’t breathing, and doctors immediately called a code blue.  An MRI showed brain bleeds, but doctors didn’t know why. Jori and Dan were sent home to care for Luxton. At 3 weeks old, Luxton’s oxygen and heart rate plummeted, so they rushed him to the hospital where he spent another 3 months while doctors treated  Luxton, and tried to find the cause of all his symptoms.

Jori said,  “They told us whatever he has is terminal, so don’t expect him to look at you, don’t expect him to laugh. He’s never going to play with toys. He’s never going to walk, he’s never going to crawl. He’s never going to sit up, he’s going to be a vegetable. They didn’t give us very much hope. One doctor wanted us to put him in a long-term care facility and that was really hard for us because we had no answers brand new baby.”

Finally they ran a test called Microarray. It showed small deletion on chromosome two. At almost 16 months, they finally received an official diagnosis : Autosomal Recessive Centronuclear Myopathy type 5. There are three cases that they’ve found, but Luxton’s is the only case with the two mutated genes

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