Amanda the fighter Little Amanda has exceptional grandparents who have set up the Amanda-Raymond-Lamoureux Foundation for DiGeorge Syndrome. In January 2007, just as I was about to experience one of the most beautiful moments in the life of a future grandmother, I received some terrible news, one of those pieces of news that you never […]
Life with a different child Fragile X syndrome Montréal, February 27, 2011 I’m the mother of two children, one of whom is an 8-year-old boy with Fragile X syndrome. We were diagnosed relatively early, at 20 months, following several neurology appointments at Hôpital Ste Justine. This syndrome is still relatively unknown to health professionals
Félix, our “little” happiness On the occasion of International Rare Disease Day 2011, we’d like to share with you a letter written to our son Félix, who will be 2 in April and suffers fromhyperchylomicronemia. It’s been almost two years, Felix, since you changed our lives forever. You are a daily ray of sunshine
The challenge of the 18th Congenital hyperinsulinism This year marks our 18th year living with a rare disease. Rare Disease Day is the perfect time to highlight a new challenge facing us all: changing GPs. Our daughter Catherine’s transition from hyperinsulinism to adulthood means she can no longer be cared for at the children’s
Zackaël and Mitochondria Progressive External Ophthalmoplegia ( Mitochondrial myopathy with DNA2 gene mutation) Zackaël is the baby of a family of 3 children. A little darling who was sleeping through the night from birth. A little tocson, a playful baby. But something worried me. Zackaël was full of ganglions in his groin, under his arms,
Life is beautiful, but health is fragile… Hereditary spastic ataxia with a dominant gene (Magdalen Islands). “Hello, I’d like to encourage you to enjoy the present moment without thinking about the past. I used to be a speech therapist (and CHSLD care worker) who loved all sports. One day on my 28th birthday, a fortune-teller
“Hello, I’m writing to you today to tell you about my daughter Skye. A smiling, blue-eyed little girl diagnosed on December 20 with POLYMICROGYRIE and SCHIZENCÉPHALIE. Skye’s adventure is still in its infancy at just 19 months old, but we’ve already experienced a lot of highs and lows, victory and defeat, sorrow and joy. It
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