Little girl and mother part of awareness campaign on “The Today Show” for rare, often misdiagnosed disease affecting young children

News of a child’s serious illness can cause any parent to feel a sense of despair and helplessness. But one mother is turning that diagnosis into a mission to raise awareness of a rare disease. She says too many children are going misdiagnosed and funding must be raised to find a cure.

“Charlie was born on April 21st, 2009 at a very healthy 9 lb. 6 oz., she was a wonderful baby,” said mom Amber Trenaman. The Trenaman family lives in the Tofield area and runs a locally owned and operated bu-siness, T3 Water Hauling Ltd., just off Wye Road and R.R. 202.

Their joy turned to concern for their daughter after only a few short months.

“It wasn’t until December of 2009, at seven and a half months old, that we noticed pimple-like lesions on her scalp,” said Amber. “We took her into the pediatrician, who initially diagnosed her with infected cradle cap and sent us home with cortisone cream.

“The lesions became infected and we consulted a second pediatrician who prescribed Charlie oral antibiotics and asked to see us back in a week. When we retur-ned, he then referred us to a pediatric dermatologist at the Stollery who performed a biopsy and confirmed, on April 18th (three days before Charlie’s first birthday) that she had a rare blood disease called Langerhans Cell Histiocytosis.

Patricia Harcourt story

For more see the March 20/12 issue of the Tofield Mercury