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Meet Our Hero: Stephanie

Stephanie, 6, has only ever celebrated one Christmas at home; the rest she has spent as an inpatient at SickKids. Despite her medical setbacks, this little hero is full of personality.

Stephanie was born with a rare condition known as an omphalocele. This abdominal defect caused some of her internal organs to grow on the outside of her body. After birth, she developed other conditions that interfered with the digestion of food and the absorption of nutrients.

Stephanie

Stephanie, Omphalocele

To date, Stephanie has undergone 13 major surgeries and more than 85 invasive procedures. She often has to cope with debilitating pain that makes it difficult for her to do even the simplest tasks, like getting dressed or brushing her teeth.

The chronic pain management team at SickKids has helped Stephanie, and her family, cope. Stephanie currently takes six different kinds of pain medications and continues to be treated for her pain.

With the help of Dr. Paul Wales and his team, Stephanie no longer needs to run six different machines at home to keep her nourished and deliver essential medications. Dr. Wales is the director of the Group for the Improvement of Intestinal Function (GIFT) at SickKids, which works to improve the clinical care of children, like Stephanie, who suffer from intestinal failure.

Stephanie is a fighter. She wakes up each morning ready and willing to do whatever it takes to get through the day. Her parents hope Stephanie will begin to go to school regularly, downhill ski, play soccer and live like any other six-year-old girl.

Stephanie is one of the more than 100 children that have been assessed and treated by the GIFT program at SickKids since it began in November 2002. This program is the only formal program for paediatric management of intestinal failure in Canada.

Stephanie was featured in the 2008 SickKids Special Section in the Toronto Star. Click here to view the story.

 

HOW CAN YOU HELP? Thousands of children like Stephanie need your support.