Research for ciHHV-6 activation

My son Kaden was born in 2013 full term after a high risk, yet uneventful pregnancy. He was our fourth child, we have an older daughter, and lost twins shortly after birth in 2012. After a 4 day NICU stay, we got the all clear to pick him up, and upon his checkout he was found to have severe cardiomyopathy. Hours later, he was taken by flight for life to Children's.


After 2 1/2 weeks of tests to find out what caused his heart to start failing, his results showed extremely high copies of the HHV-6 virus, which we found out was known as ciHHV-6 (chromosonally integrated, it's in every part of his DNA). Because he was the only infant in the world to present with ciHHV-6 and cardiomyopathy, his doctors were at a loss for what to do. They decided not to risk a heart transplant for fear the virus would reactivate and attack a new heart. He passed away in my arms on his three week birthday.


In the months following, we learned that I also had the integrated virus, and so does my daughter. This spans back generations, and affects 1% of the population (unlike HHV-6 which affects 95% and presents as cold symptoms usually before the age of 2, then goes away). We have been working with the HHV-6 Foundation to find answers for why this happened to Kaden and to many other babies, children, and adults. They believe it has something to do with medications I took while pregnant with him, although there were so many at that time it was a guessing game to figure out which.

We recently learned that a doctor in Germany is testing common (and not so common) medications to find out which activate ciHHV6 cells - the chromosonally integrated virus we believe activated in my pregnancy and contributed to/caused Kaden's cardiomyopathy. The HHV6 foundation I've been talking with since Kaden died sent this doctor and his team grant money - and they were able to figure out one of the medications I took during my pregnancy with him did cause activation.

This is huge - because most people who have ciHHV6 have no idea. It is thought to cause a high rate of infertility, miscarriage, and stillbirth. In order to complete testing they still need $5,000.

We are asking for you to consider donating, any amount, to help finish this study. Any and all funds raised will go to the HHV-6 Foundation (hhv-6foundation.org ) to be given to the doctor's research. I can't imagine the amount of lives we can save, the heartache we can prevent, by allowing these tests to continue and have a voice in the medical community. This needs to be studied more, and taken seriously as right now it is a completely unheard of condition.

Please consider sharing and donating - thank you so much.

Sam and Diana Stone

Read our story at : http://dianawrote.com