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John’s Story By Rick Myers A s parents, we all want the best for our children. We provide housing, clothing, nutrition, education and love. We shuttle them around town to various activities such as dance, soccer, baseball and many others. We go about our daily lives without much regard for children’s health. We mostly take for granted the fact that they are healthy. Sadly, not everyone has that luxury. On May 1st, 2005, a gift was presented to Johnny and Sabrina Hope. Well, two gifts really. On that day, this couple was blessed ���������� �������������� ������������ ���������� �������������� ���������� ���������� �������������� ���������� ���������� �������� pounds for their son and less than four pounds for their daughter, there was never a thought that they were anything but healthy little babies. Little John and Johnna Claire were welcomed to the world by their parents that day with pride and happiness, eager to begin their new lives with these two little angels. After receiving a clean bill of health by the doctor the Hope family left the hospital to begin their new life as a family. For the most part life was fairly normal around their house. The children grew quickly and were eager to learn new things. As time passed, however, Sabrina began to notice a pattern in John’s health. While Johnna Claire seemed healthy enough, almost from birth little John seemed to be sick quite a bit. Most of the time it was things that we would consider normal childhood maladies, such as ear infections, sinus problems, colds and fevers. It seemed to be constant, with trip after trip to the pediatrician only to be told “This is normal for a child”. However, for the “normal health” of a child his age he had surgery after surgery including adenoids, �������������������������������������������������������������������������������������������������������������������������� As days became months and months became years the constant illness began to take a toll on the family. Sabrina suspected there was something more going on with John’s health, but had no idea what it could be. Her mother’s instinct told her these illnesses were �������������������������������������������������������������������������������������������������������������������������������������� ������������������������������������ Sabrina’s father, just by coincidence, was talking to a co-worker one day about his grandchildren. He was explaining to his friend how little John suffered with illness after illness with seemingly no help to be found. The co-worker mentioned to him about someone he knew from a nearby town who had a child with very similar symptoms. He went on to explain that this child had been diagnosed with a very rare condition and was currently being treated at UNC Hospital in Chapel Hill. He gave the grandfather the contact information for the family and it was passed along to Sabrina. Finally, there was a glimmer of hope for little John! After a few months Sabrina contacted the child’s mother, and what she found out was amazing. The story of this young child’s illnesses practically mirrored what John was going through. This mother urged Sabrina to contact a doctor at UNC Hospital as soon as possible to get John an appointment. This was the Hope family’s introduction to Dr. Philip Roehrs. Dr. Philip Roehrs is a practicing pediatric hematology/oncology physician currently working at UNC Hospital in Chapel Hill NC. However, his special interests and research focuses on patients ���������� �������������������� ������������������ ���������������� �������������������������������������� �������� ������������ immune disorders, such as hermophagocytic lymphohistiocytosis (HLH). He previously served in the same capacity at Cincinnati Children’s Hospital in Cincinnati OH, where he trained and �������������� ���������� ���������������� ���������������� ������ ���������� ������������ �� ���������� ���������������� ������ ������ ������ known by most of his patients made the Hope’s feel at ease and ���������������������������������������������������������������������������������������������������������������������������������� Sabrina, who tearfully shared “I was on the verge of giving up. I never knew what was next for John”. �������������������������������������������������������������������������������������������������������������������������������� had the answer the Hope’s had been in search of for six years. John Hope had a rare immune disorder known as Hypogammaglobulinemia. Dr. Roehrs explained “Under normal circumstances the ������������������������������������������������������������������������������������������������������������������������������������ In John’s case, his body does not produce enough of the disease ���������������������������������������������������������������������� According to Dr. Roehrs, “While this disease is considered rare, just due to the large population of the U.S. I see and treat quite a ����������������������������������������������������������������������������������������������������������������������������- ciencies is very common. “Because these diseases manifest itself as many normal childhood illnesses they often go misdiagnosed or undiagnosed altogether” stated Dr. Roehrs. Currently the only known cure for this disorder and other similar disorders is a bone marrow transplant, however this is usually a last resort. Instead treatment consists of monthly infusions of antibodies administered intravenously. John receives two monthly treatments at home, and for every third treatment he travels to UNC Hospital. During this visit, he is monitored and a checkup is given to insure the treatments are being effective. He will need these treatments his entire lifetime. Dr. Roehrs is passionate about helping those young children diagnosed with disorders such as John’s. “Families of these patients face not only the challenges of a sick child, but other hurdles as ������������������������������������������������������������������������������������������������������������������������������������ getting their child diagnosed, getting treatment, missing work and just the stress that goes along with these things” he explained. Harnett Life PagPea g5e7


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