We now entered a new chapter in our PRS research...surgery. As I read more about what Dr. John Siebert wrote on the PRS Resource web site, the more excited I got. An excerpt of his article:
"Reconstruction involves the microvascular transfer of soft tissue flaps containing fat and thin layers of fascia as thin as tissue paper which are transferred to the face from areas of the body not involved with the atrophy process. The transferred tissues are taken along with their nourishing blood vessels usually from the flank or groin. The blood vessels contained with the transferred tissues are then reconnected to blood vessels in the face in order to transfer living tissues with intact blood supply. The tissues are then sculpted and inset into the face to restore the facial shape which has been altered by the disease process."... "By intervening earlier perhaps the biology of the disease can be changed."
It made sense. Here's a doctor who has performed surgery on hundreds of patients with facial deformities and/or parry romberg's, who has had success with halting the progression! I couldn't believe my eyes!
I wrote a short email to Dr. Siebert, telling him about our situation and asking if he thought Hank would be a candidate for surgery. I eagerly awaited a response. A few days later my cell phone rang and the happy voice on the other end said, "Hi! This is Dr. Siebert!" I couldn't believe it! This world-renowned, busy New York surgeon was calling ME? On my cell phone, while I am shopping for make-up at Ulta? Holy Smokes! He asked if this was a bad time...and I said "No!" as I dropped my basket, ran out of the store and grabbed my notebook as he started talking.
We discussed Hank's history, Dr. Siebert's findings, our theories on causes, etc. Dr. Siebert asked me to send him some photos of Hank. He said I was doing all the right things, researching all the options and finding out as much as I can. And then he said, "Don't worry, I can help." Walking on air! That's how I felt. Finally, someone just gave us hope!
On October 16, 2008, our then 7 year old son was diagnosed with Parry Romberg Syndrome: an extremely rare, progressive, "incurable" auto-immune disease that causes facial atrophy...meaning it causes half the face to "waste" away. Some cases include seizures, strokes or other neurological problems. This is the story of our family, and specifically our son, Hank, as we struggle with diagnosis, search for a cause and a cure and go to the ends of the earth for treatment.
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