Terminal Illness

While listening to the radio this morning, I heard a sad story that brought tears to my eyes. A little girl was surprisingly celebrating her third birthday. Specialists had told her parents that she wouldn’t live to see her first birthday. Her father went on to explain that she had severe brain degeneration caused by mitochondrial disease. He did not know how much longer she would be with their family. She had not achieved any of the familiar childhood milestones. Her family had been providing for her complete and total care for all of her three years. He was not complaining or asking for help, he was praising God for the three years they had together. Our local Christian radio station offers day sponsor spots… [more]

Malaria can be deadly. Biting mosquitoes spread it and more than 1 million people, mostly children, die from Malaria each year. Malaria is preventable and it is treatable. Unfortunately, many areas that are affected by Malaria are impoverished. Therefore, the people do not have access to the medicines or tools to keep themselves and their families safe. Malaria is endemic in more than 100 countries and territories. World Malaria Day, April 25, hopes to build awareness to help put a stop to malaria deaths around the world by ensuring universal coverage by the end of 2010. They intend to stop malaria deaths by offering indoor residual spraying, and bed nets treated with long lasting insecticide to all at risk people.The United States is spending tens… [more]

Chediak-Higashi syndrome is a rare inherited genetic disorder that affects the immune system and many parts of the body. The disease damages the cells of the immune system, which leaves them unable effectively to fight off viruses and bacteria. Beginning with infancy or early childhood most people with Chediak-Higashi syndrome have repeated and persistent infections. Few people with this condition live to adulthood because the infections tend to be very serious or life-threatening. People with this syndrome also have abnormally light pigmentation of the skin, hair, and eyes known as oculocutaneous albinism. Those affected usually have fair skin and light-colored hair, which has a metallic sheen. Oculocutaneous albinism also causes vision problems including reduced sharpness, rapid involuntary eye movements, and increased sensitivity to light. Most… [more]

This is a difficult topic to think about and worse to live through for family members. However, death of an adopted child is a reality for some parents of special needs children. Many families have pursued adoptions of children whom they knew were dying so that the child could have family support during the end of life. Others found out after the adoption that their child had a terminal illness. Knowing that a child’s death is imminent because of disease, injury, abuse, or birth defect does not make it any easier to accept. The adoptive parents, grandparents, siblings, friends, and medical team are those closest to the child and obviously will be devastated throughout the experience, and ultimately upon the child’s demise. Every year in the… [more]