Our son 3 1/2 year old son Harper Jackson Lee has Ohtahara syndrome which is severe, progressive Epilepsy. He has seizures daily which cannot be controlled by medications or therapies. He is not mobile or verbal and eats with a GJ tube. Neurologists said our sweet guy wouldn't live past 6 months old but he has defied all odds and is still here with us. Currently, Harper is in the PICU at Children's Mercy Hospital in Kansas City. Harper is on a bipap mask because he will not breathe correctly on his own. The carbon dioxide levels in his blood are at a dangerous level and will not go down. Harper had a MRI and the brain scan showed extreme tissue loss in his brain stem, which is the area of the brain that controls breathing. Due to his progressive disease, his brain has started to deteriorate and according to doctors, this process will continue no matter what. My husband and I wish to take our son home and let him spend the remainder of his life at home with us, his sister, his puppy, and family and friends. During this time Candace will not be working. Due to extensive medical bills, our family does not have enough financial help to afford a funeral for Harper, should that need arise in te near future. Also with one parent out of work, medical bills and regular cost of living expenses are going unpaid. We are asking for some help from our family and friends to help us at this time. Any help is greatly appreciated and will allow Candace to not work and be with Harper at home all of the time. It will also help with any bills or medical expenses as well as be put towards a nice funeral for our son. Thank you from the bottom of our hearts for all your help, love, and prayers.