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Stories of warriors touched by Wilson’s Disease and how they fought back by rallying people they know to walk with them and raise money for the patient registry.

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Caleb McNiece warrior

caleb mcniece

Our journey with Wilson’s started before our daughter, Sophie, was born. We underwent genetic screening following two miscarriages and discovered that my wife and I were both carriers of Wilson’s. There was no family history of the disease, and neither one of us had heard about Wilson’s prior to the testing.

Shortly after Sophie was born she was tested and was found to have both of our mutations. Currently (age 18 months), Sophie is managing well on a low copper diet and remains asymptomatic. She is being closely monitored by a hepatologist. Because of the rarity of her early diagnosis, he has been in contact with physicians around the world to discuss her treatment plan.

We are participating in the Big WOW to bring awareness to Wilson’s Disease. We consider it a great blessing that we know her diagnosis now, and we hope to use that knowledge to educate others and raise funds for future research.




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