World Families Forums - Testing for Niemann-Pick disease for Cann family

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Author Topic: Testing for Niemann-Pick disease for Cann family  (Read 1168 times)
angieandlesleysmom
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« on: August 03, 2007, 02:31:46 AM »

In 2003 we said good bye to our 18 year old daughter, the most loving bright and beautiful angel, Miss. Lesley-Anne Doucet.
She was diagnosed with Niemann-Pick Disease, type C/D.
It was thought at first she carried type "D" which is French-Acadian, and is found only in the french communities around Pubnico, Amirault's Hill, Hubbard's Point, Sluice Point, and others in Yarmouth county.
Upon blood testing from my father, Stan Cann, (parents were- Irving Cann, and Blanche (Gavel) Cann of Yarmouth N.S.) it was determined by the researchers at Dalhousie University in Halifax Nova Scotia, he-we- carried type "C", a Spanish-American variant of the disease.
This is a cruel and awful disease, and we lost the light of our world.
My ex-husbands family all lied and said there was NO 'mark' on their family tree, so for a long time I did not know what was wrong, I just KNEW something was not right.
His family had lost family members too, but I had never known anything about it, I had NEVER heard of it before 1996. They would not tell me anything at all.
The Neuroligists at the IWK Childrens Hospital in Halifax did not think there was anything wrong. They mis-diagnosed her- twice.
But as I pushed for the truth, they finally took me seriously, and tested her. I had no idea this would be the finding........I just knew she was not progressing the way she should.
Lesley was always a loving, kind girl, with a love of life and all around her. But she became slower at learning, and her mobility became affected, as did her speech. Finally she was unable to eat, and was tube fed through a tube in her belly. She attended school only a couple days per week.
Her sense of humor and laughter and spirit were what got us all through, and her loving step-dad, my wonderful husband, Norman Bethune.
Not a day goes by Lesley-Anne is not thought of and missed. She is with Jesus, and we will see her again one day! PRAISE THE LORD!!!!


I urge you all to get tested, test your children - because although it takes BOTH parents to carry the defective gene and pass on NPD, one parent can make a child a carrier, and then that child -if they have a child with another carrier, will pass it on to their child.
There is the Niemann Pick Disease Foundation where you can go to for more info. Just type it into your search engine, or ask your doctor.
I am interested in hearing from other parents who lost children to NP.
I am at 902-742-2127 or email at     angelic2@ns.sympatico.ca

God Bless you all, and thanks for listening.
Susan Cann-Bethune, Yarmouth Nova Scotia, Canada

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