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Dream Builders on Story Net

jos_k2_items Table (1)

idtitlealiaspublishedintrotextfulltextvideoplugins
1Dream Buildersdream-builders

Monika Nelis-Dupont doesn’t feel that much different from any other 13-year-old, except that she needs help with things most kids her age take for granted.

 

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Dream Builders

Recording Date:- 21-01-2013

Storyteller:- Monika and Mary Nelis

Province:- Quebec

Language:- English

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Monika Nelis-Dupont doesn’t feel that much different from any other 13-year-old, except that she needs help with things most kids her age take for granted.


"You have to do everything in your power to make it a good life, no matter what."

Monika Nelis-Dupont doesn’t feel that much different from any other 13-year-old, except that she needs help with things most kids her age take for granted.

Born with a rare genetic disorder that affects the way her bones are growing, the Grade 8 student at Massey-Vanier High School in Cowansville, Qc. uses a scooter to get around and hopes one day to be either a veterinarian or a photographer.

Monika was three when she was diagnosed with mucopolysacharide disease, or MPS, which is caused by the absence or malfunctioning of enzymes needed to break down certain carbohydrate molecules in her body. There is no cure and the only drug therapy known to slow the disease down can cost thousands of dollars per week to administer.

Monika and her mother Mary talk to StoryNet about coping with MPS, about Mary’s long struggle to get her daughter into the Aldurazyme drug-treatment program, and about life in a town where sidewalks and many businesses are simply out of bounds for people with special mobility needs.

Recorded in Bedford, Quebec.