Carolyn and Amaya
Amaya Black was 7-years-old when she was diagnosed with Central Nervous System Vasculitis (CNSV), a condition where the body’s immune system attacks arteries of the brain, causing inflammation and swelling.
CNSV is not easily diagnosed and the waiting was very difficult for Amaya and her family. It took four to five weeks to be formally diagnosed and Amaya was in Intensive Care for that entire period, much of it in a drug-induced coma. After about six weeks, imaging started to show something to the doctors.
“Any diagnosis involving the brain is complicated because there are a lot of interrelated systems that may be affected. Depending on the circulation in a certain area, it can impact verbal skills, ability to create, memory. The impact on Amaya has been pretty profound,” says Amaya’s mother, Carolyn.
Treatment for Amaya’s condition required the family to frequently travel to the IWK Health Center, which was over 300 kilometers from their home in Prince Edward Island. After three months of staying in the hospital with Amaya, her father David needed to go back to work and the family needed to provide some normalcy for Amaya’s older brother, Jordan. Carolyn stayed at the hospital with Amaya while David traveled back and forth. In one month, the Blacks would travel as much as 2000 kilometers.
The Blacks found out about Irving Oil’s Fuel the Care program through another family who had been assisted by the program, and the family soon began taking part in the program to help alleviate the costs of traveling back and forth to the IWK. Amaya still struggles with her disease, which hasn’t reached remission yet, but she is now able to receive much of her care locally and travels less frequently to the IWK.
“It’s an amazing program. No one can plan or budget for a family member who becomes seriously ill,” comments Carolyn. “When you’re living outside your home province, expenses add up, so to have even part of our travel expenses covered is a big help. It’s nice that Irving cares enough to offer this type of program. Every little bit helps.”