Amy’s Story… Spring 2003
By Rachelle Sutherland
Bright-eyed and curious, Amy Sigfusson runs around her yard in Prince George, playing with her sister Merissa. The sun is shining. The grass is green and tickling her feet. And, today, Amy feels good. Unfortunately, this is not always the case. Amy has a very rare and life-threatening mitochondrial (metabolic) disorder, which has forced her to spend much of her young life in hospital. I had the opportunity to meet Amy and her family this spring. This is their story…
Amy will be two this August and has spent a considerable amount of her young life in hospital. Her troubles started even before she was born.
“Towards the end of my pregnancy Amy stopped moving,” recalls Amy’s mom Tannis. “I went in for an emergency C-section and when Amy was born she was not breathing. She was resuscitated and spent the first nine days of her life in the Special Care Nursery at PGRH. It was tough with her in the special care nursery…being away from her when she was so new and little.”
It was a happy day when Doug and Tannis were able to take Amy home. Life was as it should be with a new baby in the house…hectic, yet wonderful.
“We were elated when we could finally be together as a family. It was so nice to have Amy home” says Tannis. “It would’ve been perfect except I couldn’t shake the feeling that something just wasn’t right. She would scream when we would try and feed her and her little body would stiffen up.”
At 3½ months, Amy seemed to be getting stiffer and began turning to one side. When her Pediatrician saw her, he again hospitalized her for “failure to thrive”. There was talk of cerebral palsy. Tests, however, eliminated this possibility.
The next few months were filled with hospital stays and many tests, trying to determine what was causing Amy’s illness and making it impossible for her to eat. After three weeks in BC’s Children’s Hospital, doctors found that Amy had extremely high levels of lactic acid in her muscles, a type of energy metabolism problem.
“Specialists finally concluded that Amy has a very rare mitochondrial disorder. They have told us that there is no cure,” says Tannis. “Amy will continue to have difficulty eating and she requires rehabilitation and therapy. At this point, she can only have pureed foods, and she consumes most of her fluids while she is sleeping.”
With her eating difficulties, visits to the hospital and therapy, life might never be normal for Amy.
Every moment of every day is precious, and her family does everything they can to help her enjoy her time to the fullest. Even through her illness, Amy is truly a two-year old at heart.
“When your child is sick, or suffers in any way, you learn what is important in life. If Amy wants to run play in the mud…well, she gets to run and play in the mud. Life is too short to get upset about the little things.”
Hospital services are critically important to Amy and her family.
Tannis and Doug feel strongly that the renovations and focus on family-centred care will dramatically improve conditions for children and families at PGRH.
“When it is your child, your baby…it is just so hard. The renovations and private rooms will provide space for us to be together as a family. Simple things such as eating supper together, or bathing your baby, are so important and so missed when your child is in the hospital.”
The renovations will also provide quiet spaces and healing rooms for children or their parents. “Sometimes you just need space to be alone…to grieve or scream and yell, or cry,” says Tannis.
“The increased space in the private rooms will also be wonderful for our eight year-old, Merrisa” says Amy’s dad Doug. “Merissa has loads of energy and loves to dance and do gymnastics for Amy. And Amy loves to watch her. It makes her laugh and puts a beautiful smile on her face.”
Tannis agrees. “Simple things, such as being able to be with Merissa, make the time in the hospital so much easier for Amy. We are not looking for extravagance. Just a more nurturing space where our kids, our babies, can feel safe and happy.”
To view Amy’s Story in PDF format please click here.
Please click here to read a letter from Dr. Marie Hay, Chief of Pediatrics at PGRH. Dr. Hay believes strongly in the benefits of family centred care and how the renovations at PGRH will improve the lives of her patients and their families.
Would you like to help make a difference for families and children, like Amy, in the hospital at PGRH?
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