William Jr was born, not with Down's syndrome and dwarfism as they were told he would be, but with a very rare congenital syndrome (Larynx esophageal tracheotomy cleft) instead. William was basically born with his trachea (windpipe) and his esophagus as one tube instead of two, and also had all his organs reversed in his body. He was born with two stomachs, so one had to be removed along with most of his intestines. He is one of only 8 children in the world with this syndrome, and his case is the worst. Because of the severity and rarity of his syndrome, William and his parents have had to work with specialists and surgeons from Boston, UNC hospital and Duke Hospital throughout his life. He spent the first 29 months of his life in a hospital, with his parents at his side. He has gone through countless surgeries to correct many issues. He has a trach tube to breath, a vent, and a feeding tube to eat as well as a heart monitor. William Sr. and Janet were told their son was likely not going to survive past 3 years of age. He did though, and with excellent around the clock care at home he has successfully attended school, and graduated from Garner High School. He is now nearly 26 years old and is working in a program for disabled adults. He can't talk, but communicates his needs and feelings through his expressions and actions. He loves interacting with people, loves music, and participates in church praise and worship. His medical challenges are many, and his day to day care is not cheap. Janet is a registered nurse, who works full time in a nursing home an hour from home and then comes home to care for William Jr. in the evening and on weekends. An overnight nurse is in the home each night. Janet recently had to have foot surgery and was out of work for almost 2 months and had to use up her sick leave and vacation time to keep money coming in. She did not get any overtime however during these two months which they depend on.
William Sr has also had some serious medical issues in the past year which have added to their financial stress. He was hospitalized in May for pneumonia and just recently for diabetic ketosis and pancreatitis. They are still paying the part of the pneumonia bill that was not covered by insurance ($4000). The recent hospitalization kept him out of work almost two weeks, and when he went back he was told by the owner of the auto shop where he has been a mechanic for over 25 years that the building and land that the shop was on was being sold, and the shop would not be relocating. That means as of January 31 William is now without a job.
As a result of these recent losses the Hartsfield family is behind on their bills, and they are mounting with each day. William and Janet have always taken care of William Jr, and have adjusted their lives around his needs and strict schedules. The family lives very frugally, and have no "extras". They basically work, go to church and the grocery store and that's it.
According to Janet, they have no regrets, but the medical bills are financially draining, even with insurance, and they are physically exhausted much of the time. This added financial worry is making it even worse. William is actively seeking new employment as a mechanic.
Any financial help at this time would be gratefully accepted and much appreciated so that they can continue to care for their son at home without worry while William Sr. finds a new job.
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