“Are you sitting down?”

“Are you sitting down?” Wasn’t really what I wanted to hear from our Neuro guy Jeremy when he finally got around to talking to us on the phone. Words like high-signal, brain stem damage, unusal, lactate and abnormal swam around my head. Today at 3pm we went in to see him. 

They can only give us their best guess at this moment...Mitochondrial Disease.  With over 1400 different types it’s hard to get a definiate idea of what is happening.....but with the damage that is evident and high levels of lactic acid in his brain...this is their conclusion. As to what type...well Noah had 5 blood tests today to check for the rarest types, then there will be a lumbar puncture and a visit to the metabolic team to follow.  As we don’t know the type he has no one will give us a prognosis.

I asked them right out how long we had with Noah and they simply said we don’t know. The early onset of the illness usually means it progresses quickly but no one can tell us how quickly. 

We are beyond devestated. Our hearts are absolutly broken as you can imagine. We want to spend all the time we have with Noah doing everything we can to make him as happy as possible. Thankyou for you kind words and prayers, they really do help us through our darkess days.