King Con Strong

On December 3, 2016, our sweet baby boy, King Con, aka CW, was diagnosed with Early Infantile Krabbe Leukodystrophy, after the disease had progressed too far for him to receive the only available treatment, a lifesaving stem cell transplant.

Krabbe is a terrible, fatal disease that causes the degeneration of the white matter of the brain and affects the nervous system. When untreated, Krabbe warriors suffer great pain & discomfort as their bodies shut down & their nervous systems malfunction. Life expectancy for Early Infantile Krabbe is usually between one and two years of age.

But, here's the more devastating part, at least for us. The life saving treatment available is only effective if administered before onset of the disease, i.e., before a child is symptomatic. Early detection through newborn screening for Krabbe is critical in giving these warriors a chance at life.

Several states have now implemented, or are in the process of implementing, newborn screening for Krabbe. Arizona is not one of them. If King had been born in New York, this would have been caught and he would have gotten a transplant and a chance at life, beyond enduring this awful, devastating disease.

During the last couple of years, Krabbe warriors and their families fought to bring Krabbe screening to Arizona, but it has yet to be implemented. If it had, King's outcome would be very different. So we're joining the fight for screening and asking for all your support.

#CW #kingcon #kingconstrong #connorscorner #krabbewarrior #krabbesucks