About Me

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My name is Landon Knight. I will be 6 on November 22, 2011!! I will also start kindergarten this coming August 2011 and am so excited!!! I have underwent 14 major surgeries due to my syndrome:Haddad's Syndrome (Congenital Central Hypoventilation Syndrome, Hirshsprung's Disease, and Epilepsy) 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 of the Hirshsprung's....7 surgeries 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 and a colostomy and ileostomy bag but had many surgeries to reverse them. 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!I know I'm a miracle,and I will continue to overcome anything in my path....!

Info

Letter from Dr Weese-Mayer in Chicago after Landon's week long evaluation
to see if he was a candidate for Pacer Surgery


Little Landon Knight
Anyone know anything about Diaphragm Pacers?
This is a surgery Landon has waited almost 5 years for but because of insurance, we are still waiting. Landon was tested and is an excellent candidate for this surgery. Since he lives 24/7 on a ventilator, there are long term effects such as right-sided heart failure, constant upper respiratory infections, the closing of his upper airways due to non-use, and much, much more! Diagragm Pacers are placed inside the body and in turn will shock his phrenic nerve to stimulate a breath on his own by sending the message to breathe to the brain! This not only strengthens the body as it helps you to breath on your own, but you are breathing naturally, not air being forced in by a machine! Long term costs are much much less than that of total ventilator dependency. Helps food taste better, airways to open, helps you to be able to vocalize which is something thats very difficult for a person with a trach, lessens respiratory infection by allows some people to have the trach removed! These are our goals for Landon, as we continue the fight each day for him to receive tis life changing surgery...PLEASE JOIN US! Please help us make this happen for him. This will allow him to be more independent, to go to the potty alone, get a drink from the kitchen, a toy from his playroom, play outside in the yard like a kid should do, all without a 3ft circuit of tubes coming from his neck being held on around his neck by velcrow and cloth ties, all going to a heavy, bulky machine running off of batteries only to give you short time before forced to come back inside and be pinned in a 3ft radius plugged into a wall outlet! There are better ways to VENTILATE! Less invasive, cheaper monthly and long-term, but most importantly the health affects and the benefits in Landons QUALITY OF LIFE....

Join us in finding a way to give Landon this chance to live a better healthier, easier life...

and Join us to improve the awareness of his diseases to improve research findings to help find a cure, and possibly save many lives!

People with CCHS have a chance to live a normal life expectancy IF MANAGED PROPERLY. No one should be forced to move from state to state just to receive the needed monitors to live in the comfort of their own home with family versus living in a high cost ICU Room! Families are willing to do ALL THE WORK, but we need help in the costs of providing this opportunity to our children!