History & Background
The desire and vision of one family to ensure that families receive tangible support and are relieved of the extra stress and pressure while receiving acute care at the hospital emergency ignited the formation of this foundation. In December 2011, the Owusu-Nyamekye family welcomed their second child ‘Chief’. Chief was diagnosed with Sickle Cell Disease (SCD) – a serious blood disorder in which the body makes’ sickle-shaped’ red blood cells. The result of the abnormal ‘sickle shaped’ red blood cells is severe or acute painful crises or episodes.
Sickle cell disease is an inherited disease which means that a child with SCD inherits the sickle cell traits from both parents. SCD has no widely available cure. However, treatments to improve the anemia and lower complications can help with the symptoms and complications of the disease in both children and adults. BC Children Hospital estimates that 15-20 percent of children with SCD may die.
In addition to the SCD, Chief also has severe asthma which further complicates his condition.
Chief is considered a ‘severe sickler’ and requires immediate care and attention at the hospital when he has a high fever ≥ 38.5 degrees. In addition, cold, dehydration, illness or fatigue-are all triggers of a sickle cell pain crisis or episode. Chief’s condition means that he is seen at the emergency unit of the Victoria General Hospital at least 6 times a year and most always is further admitted at the paediatric unit of the hospital for at least 5 times a year. Average admission lasts for about 4-5 days per visit. The conditions for his discharge are no pain, fever, able to breathe on his own, or no emergent clinical problem for at least 24 hours. Furthermore, Chief also has regular medical appointments at the Oncology/Haematology Clinic of the BC Children Hospital for check-ups.
Based on the family’s stressful experiences at the hospital’s emergency unit, the idea of a foundation to fill a service gap, support other families in similar situations, and compliment the efforts of the hospital was birthed. And it is only fitting to name it after the boy who go through it all-‘Chief’.