News from Far Away

Today I spoke with researchers at the Mayo Clinic. They have had Daniel's blood for about a year, and are working on it now. They are doing complex and expensive testing only possible in a few places in the world. Daniel's blood is being DNA mapped looking for specific known markers which might indicate that he had a version of Long QT Syndrome. There are many different types of this particular syndrome. From the history,(specifically of his passing, and of the failure of immediate CPR to revive him,) they believe the most likely type was Long QT Type 3, which can do exactly what it appears to have done in Daniel, which is to cause sudden death resistant to immediate CPR, many times without any prodrome or advance symptoms or history.

http://www.qtsyndrome.ch/faq.html


They anticipate some type of an answer as to whether Daniel carried clear genetic markers for Long QT syndrome, particularly type 3, within the next several months. This would be important not only because we would know what happened, but also because it impacts the conduction cardiological management of his siblings, and ultimately our entire line.
It appears that people with Long QT markers may have a normal or only slightly unusual EKG marked by a slight deviation in electrical axis most of the time, but then under stress, joy, excitement, physical activity, OTC medications, or fluid and electrolyte imbalance, may trip into an unusual rhythm which is not correctable, and ultimately is incompatible with life.
It would be important to make this diagnosis because despite the borderline EKGs of siblings, they would be managed differently and perhaps more aggressively throughout life, should one of the known marker genes be located.
There is also the possibility that Daniel did pass as the result of a disturbance in heart rhythm, but that he has a genetic marker which has not yet been recognized and noted to be associated with a fatal arrhythmic syndrome.
You might think that edging toward an answer would be a relief, or a closure, but it is not. My dear boy left us in body, almost two years ago, and the hole is so wide in our lives that I must work not to fall in. The fact that this could touch our other children, nieces, nephews, and others is so frightening to me, that even denial looks attractive, a coping mechanism I only rarely use.

These are some websites in which, at the moment, Daniel is memorialized:

http://www.qtsyndrome.ch/memoriam.html

http://www.healthsystem.virginia.edu/internet/virtualtree/remembrancetree.cfm

http://www.sudc.org/






** I love and miss you Bug. **




The second song is sung by Jody McBrayer, a singer formerly a member of the group "Avalon". Jody left the group due to a viral heart problem. We pray for his recovery.