Vanessa's story

Vanessa Numedahl is a two-year-old who is suffering from a serious medical condition.

"We knew something was wrong when she was two months old," said Jackie Melin, Vanessa's mom. "She wasn't growing properly, but it wasn't until she was 14 months old that doctors diagnosed her with PFIC."

Progressive familial intrahepatic cholestasis (PFIC) is a genetic condition that affects the liver.

Primarily diagnosed in young children, the condition makes it difficult for the body to absorb vital vitamins and nutrients from foods. If not treated PFIC is terminal.

"Basically, her liver isn't working properly," said Jackie. "If we ate a meal that was 1,000 calories our bodies would absorb all 1,000 calories. Vanessa's body might only absorb 100 of those calories."

The result is slowed growth and physical development.

"Vanessa's very small. She weighs about 10 kilograms and is dwarfed by children her own age," said Steve Numedahl, Vanessa's father.

In addition to medication, Vanessa takes several supplements every day, as well as a special formula to ensure she is receiving all the necessary nutrients her body needs to survive. The cost of the medication is several hundred dollars a month.

"We have to give Vanessa 10 times the regular amounts of fat soluble vitamins and nutrients, just so her body can absorb a fraction of that," said Steve.

A feeding tube that passes through her nose and into her stomach is used to make sure Vanessa is getting a steady amount of nutrients during the day and throughout the night, which has helped to stabilize Vanessa's weight.

On top of the cost of the supplements, there are no medical specialists in Saskatchewan that can offer treatment, so the family of four must also make a trip to Edmonton every two months to allow Vanessa to be seen by the various doctors and specialists that handle her case.

Ultimately Vanessa will require a liver transplant. The family hopes it will be within the year, but doctors are unsure when one will become available. The wait for a transplant can be tedious. Donors are rare and there is a complicated screening process involved in finding a match.

"Currently the doctors have no idea when a transplant may happen. The chances of getting a liver from a cadaver are very slim," said Steve. "Usually only two livers a year become available for transplant in Western Canada that is Vanessa's blood type. Our best bet is a liver from a live donor."

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