It’s been a crazy seven months and we don’t mean moving to a new city!

What we thought was a cyst, surgically removed from Charlotte’s head in November, turned out to be histiocytes where they shouldn’t have been. After numerous visits to Novant Health and St. Jude’s clinic getting ultrasounds, blood tests, x-rays, and more, we were relieved to finally receive a diagnosis this January: juvenile xanthogranuloma (JXG).

We always knew our Charlie was special and didn’t need a rare disorder to prove it. We have a long road ahead of monitoring her histiocyte regrowth, and potential treatments targeting its genetic mutation, but are grateful her histiocytosis diagnosis was benign when so many are not.

We’re new to the histio family but love everything the Histiocytosis Association does for loved ones living with histiocytic disorders. Being able to have a space to go to learn more about her rare disorder was extremely helpful as we navigated the crazy emotions of not knowing what the future held for our sweet girl. We’re fully aware times are tough, but if you’re able, please consider donating to this wonderful organization and being one of ‘Charlie’s Angels’ to help other histio warriors find their answers, research, and treatment.

While we can't be in Shenandoah this April for the Histio Hike, we look forward to hiking virtually on Saturday, April 26, in North Carolina while raising funds for a terrific cause. We can't wait to hike in person with everyone in 2026!

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Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation. This group is made up of a wide variety of conditions that can affect both children and adults. 

While the search for more effective treatments and, ultimately, a cure continues, the Histiocytosis Association is dedicated to supporting and empowering the patients and families who live with these devastating diseases every day.

Thank you for supporting Charlotte and the Histiocytosis Association.

One hundred percent of donations go to the Histiocytosis Association in support of its mission and programs.