Family Raises Awareness After Daughter’s LCH Diagnosis

Vivienne (“Vivi”) Horton has always been a bright and kind, albeit a bit shy and quiet, little girl. So her parents, Valerie and Terry, noticed when she wasn’t acting quite like herself. It was October 2022. Vivi seemed stiff; her head didn’t turn as well and she seemed to even struggle when walking and running. When the two year old slipped off the bathroom counter and hit her head, her parents wondered if everything was related. They rushed her to the emergency room, frightened that she might have a skull fracture. So imagine their shock and fear when the doctors shared that Vivi actually had a rare disorder called Langerhans cell histiocytosis (LCH). 

An article in KFOR shares that the doctors initially sat the Hortons down to tell them that Vivi did seem to have a fracture. But the Hortons felt their heart stop when the doctor also mentioned that Vivi had lesions on her skull and ribs. The doctors recommended that Vivi begin chemotherapy immediately.

Suddenly, in the midst of such a trying time, the Horton family found a spark of joy. Despite her cancer, and the toll chemotherapy takes on her body, Vivi has blossomed. Her parents describe her now as spunky, confident, and outgoing; she loves going to chemotherapy because all of the attention is on her! From high-fiving her medical providers to becoming a mini artist, Vivi truly has made the best of a tough situation. And even better—the treatment is working too! 

What is Langerhans Cell Histiocytosis (LCH)? 

Langerhans cell histiocytosis (LCH) is a rare inflammatory disorder that primarily affects children. Normally, Langerhans cells (histiocytes), a type of white blood cell, play a role in fighting infections. But in LCH, the body produces too many of these inflammatory cells. As these cells accumulate in the body, they can form tumors (granulomas) in multiple areas of the body, including the skin and bones. An estimated 1 in every 200,000 people has LCH. The exact cause is unknown. Some hypothesize that LCH may be triggered by an abnormal immune reaction due to environmental triggers or MAPKinase pathway mutations. 

Typically, symptoms manifest between ages 1-3. Symptoms may, but do not always, include: 

  • Red and scaly skin papules
  • Swollen lymph nodes
  • Jaundice (yellowing of the skin, eyes, and mucous membranes)
  • Fever
  • Fatigue and general weakness
  • Unintentional weight loss and/or poor growth
  • Bulging eyes or other vision issues
  • Appetite loss
  • Excessive thirst
  • Increased urinary frequency
  • Bone pain, tenderness, or lump
  • Broken or fractured bones with no clear cause 
  • Nausea and vomiting
  • Ear infections

Please note that this is not an exhaustive list of symptoms. Treatment options for LCH can include chemotherapy, steroid injections, surgery, or oral therapies such as dabrafenib or trametinib.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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