Dante: Born with Prader-Willi Syndrome

The video is a journey of our life over the past 7 years and what life is like living with Prader-Willi Syndrome. Every bit helps, thanks for your support over the years, we would not be where we are today without you, your donation is helping my son, Dante “Live Life FULL”. Thanks for taking one small step with us and hope you can join us at Erindale Park (Mississauga) on Aug 26. Sincerely Yours,  Tanya Johnson

Vote for the Prader-Willi video in the Let’s Move Video Challenge and help send Dante to Washington to meet the First Lady.

 

Alternating Hemiplegia of Childhood: Determination Bears Hope

This video tells Matthew’s story, and his struggles with the rare disease alternating hemiplegia of childhood (AHC).  It is bouts of temporary paralysis, seizures, and significant cognitive impairment.  his determination to not let the disease stop him has inspired his father to become president of the AHC Foundation as of August, 2010.  The AHC Foundation has facilitated groundbreaking research since then, and is looking to have a tremendous positive impact in 2012 for all suffering from AHC. Will you join in that fight and be that 1 in a million?

www.ahc2012.org

 

Trey Purcell & MPS II

Trey Arthur Cehak Purcell was born 19 minutes away from the leap year on March 1, 2004, his due date. Labour began early Saturday morning with Trey finally arriving in the wee hours of Monday, after a long and awesome labour. During the first hours of my labour, Ryan and I ate, went for walks, watched movies and anticipated the birth of our first baby. We were so excited. Trey’s birth was originally planned to be at home, but 35 weeks into my pregnancy, Trey was found to have a Premature Ventricular Contraction (PVC). Although it was not serious, we were no longer comfortable giving birth at home. Trey was welcomed into the world at B. C. Children and Women’s Hospital. Birthday March 1st, 2004 Height 21 inches Weight 8 lbs 14 oz Life after Trey was born was great. Actually, it was the best time in my adult life. Watching Trey grow and just watching him see life for the first time was so amazing. Everything was new and fascinating. At first it was watching butterflies, feeling new textures, learning to crawl and walk. Still now, nothing could be better than being a mom. We continue to play and explore – feeding squirrels [...] continue the story

The Boy Whose Skin Fell Off Part One

Jonny Kennedy died in 2003 aged 36. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) – which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer. In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March 2004, that was an uplifting, confounding and provocatively humorous story of a singular man.

The Boy Whose Skin Fell Off Part Two

Jonny Kennedy died in 2003 aged 36. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) – which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer. In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March 2004, that was an uplifting, confounding and provocatively humorous story of a singular man.