Diagnosed with sickle cell anemia at age three months, life has been a challenge for 10-year-old Asaiah Edwards and his family.
The Grade Five student was admitted to hospital nearly 30 times in the first two years of his life and his mother, Kai Gordon, has spent countless hours accompanying the younger of her two children to The Hospital for Sick Children (HSC). He has also had 50 blood transfusions since 2008.
Last month, Edwards became the first HSC sickle cell patient to secure a Children’s Miracle Network Champions recognition.
Presented by Walmart, the program celebrates the life-saving work done annually at children hospitals across the country. Each year, 12 patients are selected to represent the hospital at which they were treated and the millions of young people who visit Canadian paediatric hospitals.
“Asaiah is just a spectacular young man,” said Stefanie McPherson, manager of the Children’s Miracle Network at SickKids Foundation. “He has been a patient at the hospital for a long time and I think he really embodies what it means to be a champion. He has persevered and the really wonderful thing about him is that he helps other kids and he believes in the great work that is been done at our hospital.”
As part of the selection process, Asaiah and the rest of the kids from across the country had to make a verbal presentation about their illnesses and challenges in front of a judging panel.
The top presenters were rewarded with a one-week trip to Walt Disney World Resort in Orlando, Florida. Asaiah was accompanied by his mother, uncle and older brother, Shomari.
A disease that affects mostly people of African descent, sickle cell is a life-threatening and hereditary blood disorder that causes malformation of red blood cells that become distorted when they transmit oxygen through the body.
“This disease manifests itself in many ways,” said Gordon who has the trait. “You can be healthy today and very sick tomorrow. As a result, we have to interface with the school system in terms of them being able to look out for the symptoms for him. I have also had to educate myself to look out for the signs and not necessarily feel guilty that he may need some extra care or attention.”
At age two, Asaiah’s spleen was removed after his red blood cells were trapped and destroyed in the organ that acts primarily as a blood filter. When this happens, the spleen is damaged and may become enlarged leading to splenic sequestration crises that result in abdominal pain, rapid heart rate and other symptoms. Such an attack can be fatal without prompt treatment.
“After the spleen was taken out, Asaiah was put on penicillin and he started blood transfusions five years ago because he was at a high risk of getting a stroke,” said Gordon who is a program manager at LAMP Community Health Care which provides a variety of integrated programs and services to meet community needs. “He has not been admitted to hospital since the start of the transfusion treatment. That is excellent. However, the concern is if he comes off it, he may go back to being constantly admitted to hospital.”
Asaiah, who visits the HSC twice monthly for transfusion treatment, was also diagnosed with attention deficit hyperactivity disorder that’s a common childhood behavioural disorder.
“This causes him to miss a lot of time in school and he encounters difficulty focusing when he’s in the classroom,” Gordon said. “He’s however a regular child with illnesses who enjoy reading and playing video games and basketball. He’s also very curious and enjoys putting his hands to a task.”