I was looking at my stat counter and I found various people searching with google and yahoo. I would say about 25% are looking mostly about sex. A mere 10% are looking for Pompeii Disease. Shit, it reminded me how I felt so helpless towards my brother, his wife, and their son who have the pompeii disease. My nephew was first diagnosed with SMA-I or "Spinal Muscular Atrophy type I." see my old post here: Parenting

To quote,
"SMA-1 includes infants who are severely weak before age six months. In the majority of cases diagnosed before 3 months, there is lack of fetal movement in the final months of pregnancy. Proximal, symmetric muscle weakness, lack of motor development, and poor muscle tone are the major clinical manifestations. Often mild contractures are noted at the knees and rarely at the elbows. In the neonatal period or during the first few months, the infants with the gravest prognosis have problems sucking or swallowing and often show abdominal breathing. The muscles of the face are spared completely, but the ocular muscles and the diaphragm are not involved until late in the course of disease. The heart is normal. A peculiar tremor of the electrocardiographic baseline has been attributed to fasciculation of limb and chest wall muscles. Fasciculation of the tongue is seen in most but not all patients. Absence of tendon reflexes, normal reaction to sens!
ory stimuli, and an alert appearance are typical. A postural tremor of the fingers is seen only occasionally in SMA1. Intellect is normal. Respiratory manifestations include: abnormal chest shape (long, narrow, bell-shaped due to costal recession) and abdominal distension due to diaphragmatic breathing. Severe weakness includes: bulbar weakness with sucking and swallowing difficulties, weak cry, gross motor developmental delay, symmetrical affecting the limbs and axial musculature, legs more affected than the arms, proximal muscles are more affected than the distal muscles, jug-handle position of the arms, flaccid, abducted shoulders and internally-rotated frog position of the legs, abducted hips, flexed knees, externally-rotated feet.
quoted without permission from NIDRR Rehabilitation Research and Training Center in Neuromuscular Diseases (RRTC/NMD) with their disease definition: Spinal Muscular Atrophy Type I

With this type of disorder, everyone in the family was of course, scared. It was basically a nightmare. In any case, they went to Manila to have it rediagnosed, and doctors in Philippine General Hospital was able to get to the conclusion that it was Pompeii Disease. As for resources for Pompeii Disease, I wasn't able to find info about it, but will be sharing them to anyone interested on it.

Soon I'm putting up a page dedicated to Pompeii Disease on my new site, so you guys check back on the status. As for the guy who emailed me what happened to Basti not too long ago, yeah, he's doing great. They came back from North Carolina a few months ago, and the clinical trials of Duke University is still at it's infant stage. Basti is still getting infusion once every month, and from the way he looks, he is improving.

Posted by Ron Valiente