Catherine de Valence's story

Personhood is about human dignity for all.

My family has a history of a genetic disease called Huntington Courier Disease. My dad, Serge, and older brother, Francois, passed away from the disease on January 2015 at 51 years of age. His daughter who is 22 years old has the juvenile onset of H.D. My younger brother has also been diagnosed with H.D.

The symptoms of this illness strips one of human dignity. It causes depression and also attacks the muscles, which causes one to loose balance, muscle co-ordination and then needs to rely on others for eating, bathing, dressing and financial support.

I am sharing this story with you to make an awareness of Huntington Disease and how it can strip a person's dignity. Huntington disease can make the patients look like drunkards when they walk, for they are unable to control the 'courier' (dance-like) movements of their body.

My 22-year-old niece has been left in my care, and the best way we can retain her human dignity is by treating her as normal as we can in the grace and love that God gives us. If one can overlook the outside appearance of these patients, they will grow in patience, understanding and love for them. In reaching out in compassion, we see a beautiful person in an H.D. patient. A person who wants to be treated normally and with respect and dignity. Their body might be failing, but their minds are very much active and aware of what is happening around them.

Melissa has a wonderful sense of humour and has inspired me so much in the strength and perseverance she has shown. At times she needs to use a wheelchair, but at times she insists on walking as much as she can. It helps her to have a sense of independence and strengthens her legs. I pray that in sharing this story, many will grow in understanding of Huntington Disease and pray for those affected by it. 

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Catherine de Valence's story
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