My experience with Starlight is that they do not focus only on the children, nor does it single out one situation or illness. Starlight recognizes that illness, terminal or chronic, affects the entire family. Long stays in hospital, sleepless nights, repeat visits to doctors and hospitals, considerable costs for medical supplies and care all contribute to an already physically and emotionally demanding situation. Parents and siblings contribute to the care of an ill child, sometimes sacrificing their savings, time and other opportunities. Some of these children have cancer, some are stricken with debilitating illnesses confining them to a wheelchair, some are developmentally delayed, some cannot speak feed themselves, or go to the bathroom. The toll on families is huge. I can speak to my personal experiences.
When my daughter was 1 years old she was diagnosed with severe Ulcerative Colitis. In fact, she was the youngest diagnosed patient ever in Canada. We spent 3 months in the Alberta Children’s Hospital, 24 hours a day. One of us slept on a single bed in the room and the other slept in a reclining chair, we did this for 3 months, alternating back and forth. Our daughter underwent several surgeries and was in intensive care twice. It was a scary time in our lives. Through some miracle she got better and she went home after 3 months. 8 months later she became very ill again. We returned to hospital again and spent another 3 months there. She lost so much blood, she required ongoing transfusions. Her life was in jeopardy and finally the doctors decided to remove her entire large intestine. At 2 years old she left the hospital with her small intestine sticking out of her abdomen and a bag attached to collect her waste (ileostomy). She will have this for life. As a result of the various drugs they used to try and stop the disease her immune system became suppressed and she became more susceptible to illness.
My daughters condition requires a lot of attention and management. In addition, we have to get up once or twice a night to empty her waste bag while she is sleeping. Most nights I only get 4 or 5 hours of broken sleep. I am a divorced father and have my daughter 6 out of 10 days so by the end of the week I am physically and emotionally drained. As you can imagine managing her condition can be challenging when trying to plan activities and vacations. She hasn’t yet had her first sleepover, she requires someone to care for her and her bag. Sometimes when she is playing with her friends the bag will pop or come off. The resulting mess is a huge endeavor to clean up but more importantly she is embarrassed, being covered in a mess in front of your friends must be extremely difficult for her to resolve, I can’t imagine how that feels.
My daughter turned 11 years old on July 15th, as she gets older she is becoming more aware of how she is different from her classmates and friends. Sometimes she will opt out of joining her friends in activities because she is self-conscious of her bag. At Starlight events she doesn’t feel different. She is part of a family, a family that only sees her as she is, not different, just a fun and beautiful young girl.
The Starlight Children’s Foundation addresses the needs of the children and their families. On one hand they try to find events and outings that allow as many kids and their families to attend. Overnight camps with nursing staff, sporting events and shows with wheelchair access, events that are for all ages. On the other hand, Starlight doesn’t forget about the parents and siblings. Often the majority of interaction between an ill child and their parent(s) is when they are being cared for. Starlight looks for opportunities for kids, parents and siblings to spend a different kind of time together. Mother daughter spa days, day camps, concerts and sporting events, annual Christmas party, whatever they can find and afford. Two years ago Starlight invited several families to the West Edmonton Waterpark for the day. Families were provided the opportunity to swim and play at the waterpark, and were served a lunch. Shelby and I went and had a great time! All the kids there knew each other and no one was self-conscious. It was awesome!
The reason I am bringing this to your attention is I believe strongly in what Starlight is trying to do. They help kids and families when they are first diagnosed with a terminal or chronic illness (cancer, multiple sclerosis, down syndrome…etc.), while at hospital, and after they leave hospital. Starlight isn’t just for one illness and it isn’t just for the kids. Starlight recognizes that illness affects every member of the family and tries to provide opportunities to be a family and share fun activities and memories, not associated to the doom and gloom and stress of a lifelong battle with illness and disease. Sometimes kids make it back to the Christmas party, and sometimes they don’t. Sometimes you realize that kid you saw the last 2 Christmas parties won’t be there ever again, It’s sad. Starlight realizes life is unpredictable and that we should enjoy it while we can, as a family and as a community.