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Deanna's Story


At seven years old, Deanna was diagnosed with LCH, after the disease caused her vertebrae to collapse and eroded a bone in her upper eyelid It started as pain in her lower back, that progressively grew worse to where she couldn't walk unless her hands were on her knees. The pain of the tumor was felt long before it was visible to the naked eye and thus, weeks passed before she was escorted to the hospital for a long battery of testing.

Deanna was hospitalized for 10 days and given the choice of receiving chemo or having a spinal fusion, although neither option sat well with her parents. Recalling an article her mother read months prior, Jeffrey Toughill and the Histiocytosis Association came to mind, and in speaking with Jeff, they learned about current treatments and researchers. Deanna's family was connected with a female doctor at Yale, whose name they cannot remember. This doctor the initiative of phoning the Chief of Pediatric Oncology at our local hospital and advised him of the most current courses of treatments for LCH. Deanna truly believes that her outcome would have been very different if not for her kindness, assistance, and act of heroism from both the doctors, as well as the Association.

Deanna has always lived life knowing that we all possess the ability to overcome challenges if we just believe. She never once listened to the cautionary advice of the doctors who said she wouldn't be able to ride a horse, do yoga, climb mountains or do overly strenuous activity; not because she disrespected their opinions, but because she knew they would be right if she didn't set out to prove them wrong.

What defines Deanna's childhood experience with LCH is not the back brace or the hospital visits or the chemo. it is the warriors of this disease who continue to fight and research and educate. These warriors fight every day to save lives and they care enough to make a phone call, lend an ear, or offer support and in doing so, they are saving lives. 

If you'd like to make a donation to this event in honor of Deanna, please click on the donate button below. Thank you.