Allie McFadden
Caregiver
Rosai Dorfman Disease (RDD)
Allie is the mother of a Histio warrior. Her six-year-old, Hudson was diagnosed with Rosai Dorman Disease (RDD) in 2019 at eight months old after undergoing surgery for an enlarged lymph in his groin that was dangerously close to impacting his femoral artery.
That initial phone call from Hudson’s general surgeon informing his family that he had a rare disease diagnosis was one of the worst calls of their life. On top of that, Hudson’s surgeon had never heard of Histiocytosis before. It was at that moment they knew their lives would never be the same. Allie vowed to do everything in her power to ensure Hudson received the best possible care.
Hudson’s first appointment with his oncologist was the second dose of disappointing news; his oncologist had never heard of or treated RDD before. Aside from her inexperience, her nonchalant behavior regarding concerns worried Allie. Becoming Hudson’s strongest advocate was second nature to her and she started researching specialists on RDD. Allie found and contacted a specialist from Texas Children’s (TCH) for a second opinion and was able to establish a line of communication spanning from Texas to Washington. The oncologist from TCH helped ensure that Hudson had the testing he believed was necessary to determine the RDD progression in Hudson’s groin, which Allie was concerned about. Motherly instincts proved correct, and Hudson did in fact need another surgery to remove more painful lymph nodes in his groin when he was just 13 months old.
Having now lost faith in their son’s oncology office, Allie and her partner made the difficult decision to relocate their children from the only home they had ever known, to Texas, so Hudson could be seen by oncologists that specialize in Histiocytosis.
Allie’s experience fighting beside her histio warrior led her to feel compelled to do more. Each year since Hudson’s diagnosis, she has organized and/or participated in fundraisers to help raise awareness and money for research for Histiocytosis. In addition, she became an ambassador for the Histiocytosis Association and is now the Fundraising Events Coordinator, turning her passion into purpose. Her son’s diagnosis changed her path in life and she is now a fierce advocate and supporter for the histio community.
