Amy’s Story Update - 2005
Amy today
It has been two years since we shared the story of little Amy Sigfusson and her unique and uncommon condition. Amy was born with complications and had to spend time in the Special Care Nursery at Prince George Regional Hospital.
Amy in SCN
When Amy was nine months old she was diagnosed with a rare mitochondrial disorder that caused her muscles to be very rigid and prevented her from feeding properly. She had been in and out of the hospital many times while the doctors tried to find out what was wrong, and her parents got to see first hand how hard it is for children to be in the hospital.
Tannis and Doug Sigfusson are not sure what the future holds in terms of Amy’s prognosis. Mitochondrial disorders are difficult to predict, so the future may never be clear. Amy continues to struggle with feeding and speaking due to her illness and the effects within her brain.
Although she still has regular hospital visits and still needs to see a specialist, she is doing much better.
"We still take Amy’s illness one day at a time, but we feel more hopeful about her prognosis." Tannis Sigfusson
Amy and Merissa
Much of Amy’s success can be attributed to her parent’s involvement. As active parents, Doug and Tannis have made sure that Amy gets the therapy she needs to improve. Today Amy is a loving and happy little girl who loves to watch the "Price is Right."
At BC Children’s hospital, where Amy must see her specialist, they have a philosophy of care called "Family Centered Care." Parents are encouraged to take an active role in their children’s medical care and be more involved, via a parent advisory committee, in changes needed at the hospital.
In Prince George there is now an opportunity to strengthen and improve on a similar program at our hospital. The Northern Health Authority with the help of the Spirit of the North Healthcare Foundation is planning extensive renovations to the current facilities. The new facility to be named "The Maternal Childcare Centre of Excellence" will incorporate many wonderful changes including an improved patient care philosophy. PGRH will be refocusing on a strengthened model of Family Centered Care, and will have brand new facilities that will be more welcoming to our region’s littlest patients, like Amy.
Amy at Halloween
For more information, or to get involved in this worthy project please contact the Foundation office at 1-877-565-2515 or 565-2515.
