My name is Landon Knight. I will be 6 on November 22nd!! I will also start kindergarten this coming August 2011 and am so excited!!! I was born with an extremely rare syndrome called Haddad's Syndrome (Congenital Central Hypoventilation Syndrome, Hirshsprung's Disease, and Epilepsy) basically my autonomic nervous system is totally dysfunctional, my brain does NOT tell me to breathe, so I live on a portable version of life support, a home ventilator. I also have no colon because if the Hirshsprung's and have had 14 major surgeries to date... 7 having been to reconstruct my colon/ gut/ stomach/ rectum, etc. I also have seizures but have been doing better than ever... Though i take seizure meds everyday, My last seizure was June 2009!!! I used to have a feeding tube, but I worked really hard to learn how to eat on my own and had surgery in the Summer of 2008 to get rid of the tube!! I now eat totally by mouth!! I also used to have a colostomy and ileostomy bag but had many surgeries to reverse them, which finally worked in October 2007. I now potty normally and am doing very good potty training so I can start wearing big boy pants!!! So though I have a trach and am hooked to a ventilator 24/7 and have been since right after birth, I am learning how to vocalize more and more everyday, using sign language less and less... But I am like your typical 5 year old boy! Though limited in many ways, with my family and friends help and support in everything I do, I will continue to push forward with one accomplishment after another! I know I'm a miracle, as my mommy calls me her little ANGEL... I will continue to overcome anything in my path, stay free of the tumors I'm prone to in my syndrome, and best yet... On April 18, 2011 I finally won the fight for my diaphragm pacer surgery!! Currently healing as I had to have the surgery done twice in one week because of an accident pulling my drain tubes that pulled the pacer wires out of my chest! So it was redone 4 days later, now I'm home recovering well, waiting to be able to turn them on in a few months!!! Stay tuned ... ;-) Brandy Paille
