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Dillon's Story

Dillon's Story

I know #REDS4VEDS DAY is over but for the families it's never over. We have to fight each and everyday. There are so many families that may be affected by this mutation and not know it. It has taken half a century for our family to get diagnosed by death not by doctors. Tom was 50 at the time we found out. 

After Dillon passed away and his autopsy came back undetermined, I had a gut wrenching, Lord telling me feeling to not give up on finding an answer. That the unexplainable health issues my family has faced their entire life is what happened to Dillon and would also give an answer to the health issues Tom and Kelsey have faced. 

It shouldn't have to take death to get a Diagnosis from a mutation they have had since birth. It's so important for my family and families across the globe to educate Dr's, Hospitals, Ambulance Services, Nurses, Communities, States, or just anyone who will listen to your story. 

At this time there is no cure but if families can get diagnosed early there are a Team of Doctor's who are put in place along with a monitoring process.

Shelly Wooten
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