Darien (nickname: Dare) has had a long hard battle in his life. Diagnosed with JMML a rare leukemia that almost always ends in death, Darien’s treatment was aggressive at best. He went through a Splenectomy, Chemotherapy, Full-body radiation (advised to not be done under the age of 3), and bone marrow transplant. Two years of morphine drip kept him comfortable, but also made him regress in his developmental progress. When he began school he was already behind. He also faced hearing and vision problems, complications due to the full body radiation. The radiation deteriorated his inner ear bones causing substantial hearing loss in both ears. A surgery to put in a cochlear plate to help with the hearing conductivity was unsuccessful. Cataracts were also formed from the radiation, a condition he will need to live with until he is old enough for eye surgery. Emotionally Darien has had to deal with a lot in such a small time. Not only has the cancer had a toll on him, but shortly after his treatment his mother died unexpectedly. His father who is also a disabled vet worked tirelessly to help him get the needed resources necessary. At this point Darien is suffering long term effects of cancer; he has stopped growing, suffers with emotional regulation, and has been diagnosed with a host of things along with ADHD and autism. He is currently monitored by the endocrinologist, oncologist, ophthalmologist, psychiatrist, psychologist, and otolaryngologist. Currently he is in weekly therapy with a speech and language pathologist, occupational therapist, group therapist, individual therapist, and audiologist. This has already put a financial toll on our family and Darien still needs other care. We are looking to help fund his continued medical and educational treatments. We have found a facility that can help him get intensive treatment to combat a wide variety of problems, but we are in need of the money for admission and the cost of travel to get to this facility.
Did you know that many people who go through treatment can afford it? Before I met Darien, I just thought that the Cancer Society or other organizations would have helped fund all the expenses for his out of town treatment. Apparently they only provide a small portion to help with care. There are so many other expenses that families incur outside their normal budget. While Darien was 100 days in Atlanta , his family had to stay in a hotel so that he could get his daily treatments. They had to pay for food, laundry, parking, medicines, and gas. His father continued to work to pay the overwhelming amount of medical bills. His total out of pocket expenses after help from insurance, lymphoma leukemia society, Ronald McDonald house, and American Cancer society was still $130,000. We are hoping to help Darien get the current treatment that is needed and then start a non-profit organization to help others who are struggling with trying to keep their heads above water during their child’s treatments. People who have to go through this shouldn’t have to worry about money at the same time. They need to be emotionally and physically available for their sick and/ or dying children. Please help us get Darien the care he needs.