Walker Day Benefit July 9th 2016

Walker Day
Walker was born with Congenital Central Hypoventilation Syndrome (CCHS). He also has Hirschsprungs Disease(a bowel disease) and Ectodermal Dysplasia(it affects the hair, skin, nails, and teeth). The biggest issue is the CCHS, it is a Central Nervous System disorder, but most severely affects the automatic control of breathing. So where as you and I don’t have to think about breathing, Walker does. He mostly breathes ok when he is awake, although it can still be an issue when awake. However when he falls asleep, that part of the brain that controls all of those things when we sleep, like breathing, shuts down. This is why Walker has a trach. We hook him up to a ventilator (a machine that breathes for you) and a pulse ox (a machine that monitors you heart rate and oxygen levels) everytime he goes to sleep. Without the ventilator Walker would not live through the night.
This has been our way of life for almost 11 years now, and it is our “normal”. We have had nurses and other medical staff in and out of our house daily for Walker’s entire life. This has been hard but we know that is the best thing for him, and my husband and I need to get sleep at some point. Although I haven’t slept very well in over 10 years! I am always sleeping with one ear and eye open. We also have to other son’s, Wyatt 7, and Weston almost 2. Walker’s nurse also goes to school with him to keep an eye on him, suction his trach to clear his airway, and put him on his ventilator shall he need it. She takes a ventilator, oxygen tank, suction machine, and a bag that contains anything she might need for his equipment or emergencies, including an ambu bag that she can resuscitate him with if she needs to.
There is no cure for CCHS, however there is something that could help Walker and improve his quality of life drastically. There is a procedure that he can have. He can have Diaphragmatic Pacers implanted. These trigger your diaphragm (the muscle that makes you breathe). The procedure would be done in California at Children’s Hospital Los Angeles (CHLA). He has already been approved for the procedure and we go in October for his consultation to meet the 3 surgeons and team that will be performing the surgery. In all we will be making 4 trips, ranging from 4 days to 2 weeks per stay. Eventually, hopefully 6-8 months out from surgery, Walker will be able to get rid of his trach!! He will be able to do all of the things that he dreams about, going underwater in a pool or ocean, take an actual shower instead of a bath with mom helping, and most of all fit in more around other children and the general public.
This is going to cost a substantial amount of money and we are trying to raise some money to help with the funds. Please help in any way that you can, we appreciate anything and everything! You can visit www.cchsnetwork.org to learn more about CCHS and www.averybiomedical.com to learn more about diaphragmatic pacers. Also follow Walker Day on Facebook to keep up with the status of our journey.