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The 2019 Roger Neilson House – Butterfly Run – Team Kalyana /  L’an 2019 Maison Roger Neilson – Course des Paillons – Équipe Kalyana



English Version *** La version française suit ***



On 22 February 2018, Jean-Marc Gremli and Courtney Udall suffered the loss of their beautiful daughter Kalyana Christine Gremli to a terrible genetic disease. Within the first week of her life, both parents were informed that their daughter’s life expectancy was between 7 to12 days. Baby Kalyana and her family went up against all odds and fought for the next month in CHEO’s NICU department where love, extensive medical care and her will to live allowed her to build enough strength for her transitions to the Roger Neilson House (RNH) and then home. Through her perseverance and combativity, along with the tireless support from the Roger Neilson’s Team, Kalyana blessed her family and friends with her presence for 8 months.


The RNH supports and provides efficient care for families and children living with life limiting conditions. Their incredible staff members make it possible for children like Kaly to live as comfortably as possible. They oversee all aspects of sick children’s care through effective pain and symptom management. The parents are given all of the necessary tools to continue to do so at home, not only medically but also emotionally (social workers) in order for them to remain strong as a couple and individually for their sick child. They also provide a home away from home to allow families to give their children the care they need medically while in a loving environment. This includes home cooked meals and also extra snuggles by the nursing and administrative staff. Without the incredible staff of the RNH, Kalyana’s life would not have been as full and rewarding as it was. She was truly loved and continues to be, and for that we are eternally grateful.



The Roger Neilson House Butterfly Run 


Jean-Marc, Courtney and newly born baby sister Alyra hope to keep Kalyana’s memory alive by supporting others who have suffered pregnancy and / or post birth infant loss. In appreciation for the continued love and support provided by the Roger Neilson House during and after Kaly’s life, we have taken on the challenge of raising funds to ensure that all the families in need are able to profit from their invaluable services.   


In order to reach our goal, we invite you to pledge your support to Team Kalyana at the Butterfly Run on October 20, 2019, to raise funds for the Roger Neilson House. Donate Now!