This is in more medical terms for those of you who may want more of a precise explanation of whats going on with Taryn.

My name is Taryn Noel Fogel, born 12-05-01. I have a very rare disease caused by a single base pair change in my DNA on chromosone #2, this change alters the amino acid composition in one of my protiens which is specificially involved in my mitochondria which is the main power plant of my cells.

 I have mutations in both copies of my genes, the BCS1L gene, 2q33-37. This mutation is between two known syndromes called BJORNSTADT SYNDROME and GRACILE SYNDROME. The Bjornstadt Syndrome has caused my hair to not grow properly... it is called PILI TORTI hair. Also with this syndrome is nerve deafness, I am severly hearing impared and have no speech.

The Gracial Syndrome is an inherited LETHAL metobolic disorder which comes with numerous of different things...FANCONI TYPE AMINO ACIDURIA which is a kidney disorder that leads to the loss of important chemical and nutrients through the urine that leads to acidosisis, CHOLESTASIS a condition where bile formation or flow is reduced... stoppage or suppression of bile by intrahepatic or extrahepatic causes. IRON OVERLOAD...Accumulation in the liver..excessive iron builds up in the body and gradually damages the joints,liver, heart, and pancreas. There is no early symptoms. PROFOUND LACTIC ACIDOSIS...Acidosis caused by accumulation of lactic acid , more rapidly than it can be metabolized. EARLY DEATH...self explanatory. GROWTH RETARDATION....Slow weight gain, slow head circumference gain. HEMOSIDEROSIS OF THE LIVER...generalized increase in iron stores of the body tissues, particulary of liver and the reticuloendothlial system without demonstrable tissue damage. Gracile is thought to be what causes me to be globally developmentally delayed, but no one really knows since *I am the only one of three in the world ( that we know of so far ) that has this these two diseases together which is very unique, 1 in 5 trillon births, yet never has been seen before besides me, my best friend Mary  www.caringbridge.org/visit/maryzuzzolo and Connor Armstrong

 www.caringbridge.org/visit/connorarmstrong. We are three of a kind.

This is a mitochondrial disease, which I have a deficiency in complex I and III of the Electron Transport Chain, with a disturbance of the pyruvate metabolism.

I can not walk and have no protective reflexes so when I am on the ground I can fall over and hit my head so my Mommy and Daddy have to be very carefull with me. I can't do much of anything but I sure try hard.

My mommy and Daddy do not know what course it will take, the longest living child that had Gracile syndrome that is documented so far was 9 yrs old, yet I have more than just Gracile syndrome.

So for now I will keep smiling and laughing because regardless of all that I have wrong with me I am happy and glad to be here with my family. I love my Mommy and Daddy, my two sisters and big brother.