The Children

Many children suffer from PSC. Most of them also have symptoms of inflammatory bowel disease, that include Crohn’s and/or Ulcerative Colitis. The progression of the disease is inconsistent, differing from child to child. However, each child’s story may ultimately lead to the same conclusion: The need for a liver transplant.

Currently, there is no consensus on a treatment plan that can halt this staggering march towards a transplant. Children battling PSC have few options. Drugs offered simply bring relief to the symptoms of a failing liver; a liver transplant is the only known “cure.” And even with a new liver, the disease may begin anew. The randomness of results leaves families discouraged, their children victims of this disease.

Remarkably though – and for the first time – there are 25 children experiencing consistent and profound symptomatic and clinical relief as participants in a Stanford/Sutter trial. When diagnosed in the early stages of PSC, children have consistently responded to the treatment, oral vancomycin, with the same incredible response: a normal liver enzyme reading and a complete halt of the progression towards a liver transplant. This experience is evidence of how new advances in therapy may lead to effective treatments or possibly the cure for PSC.

For parents, families, and friends there is nothing more devastating than a child diagnosed with a life-threatening condition. Fortunately, the results these children are experiencing have given us a reason to believe that a treatment – and even a cure- are possible. Add to that, the gastroenterologists, microbiologists, and immunologists who are confident that a cure is near… and we have our reason to hope. Click the links below for first hand accounts of how oral vancomycin has helped improve lives of children suffering from PSC.

Alexandria’s Story
Caleb’s Story
Cody’s Story
Dan’s Story
Grace’s Story
Jake’s Story
Michael’s Story

The Children’s PSC Foundation is dedicated to funding promising scientific research in pursuit of this cure and to bringing hope to the many children suffering with PSC.