In The News


On February 28, Yolaine and Christele, Ella’s genetic counsellor who now works with Blueprint Genetics, celebrate Rare Disease Day together by kicking of Rare Journeys.


Yolaine presents ’10 years of PVNH insights’ at the Marseille Neuro-MIG meeting.


Yolaine and Ella’s genetic cousellor, Christele, were interviewed as part of Ella’s story being re-enacted in Maux Mystères, a a limited TV docu-series on rare diseases.


Yolaine presents Research is Hope at the Rare Disease Day event at the Rare Disease Foundation’s celebration.


On PVNH Support & Awareness Day, Yolaine granted an interview to CBC radio in Vancouver for On the Coast.

On the same day in the UK, an article about Finley, one of our PVNH community members, was published. And Global Genes Project ran a story about us too.

Here is a newsclip from Global News Final on July 27, 2012 about the 3rd annual hockey fundraiser held in memory of Ella. This year, we are focusing on raising awareness for PVNH while raising funds for BC Children’s Hospital

View the clip about a Wish granted to Mary Ella, in memory of Ella. Or read about Mary Ella’s trip on Make A Wish BC’s website


For Miracle Weekend 2010, Yolaine participated in vignettes about life at Children’s Hospital. This first one is about growing up, and specifically for me, seeing Ella grow and live: and this next one is about BCCH’s amazing staff:


In May 2009 Yolaine participated in 2 radiothons and one telethon, in memory of Ella, to help raise funds for BC Children’s Hospital.

After Yolaine gave interviews for the radiothons, BCCH’s Foundation contacted her to ask if she’d be willing to do a TV interview with Global BC’s Chris Gailus to air during Miracle Weekend. She was very honoured, humbled and anxious to tell Ella’s story.

On a beautiful, sunny and warm morning, Yolaine joined Chris Gailus outside BC Children’s Hospital to talk about my angel Ella, her brave fight, the amazing hospital staff who are now part of her family and to ask British Columbians to help her ensure that all kids in BC get the best care they can.

She said it was like talking to an old friend about her girl and what they went through. The chat was much longer than the final product, but in the end Global TV and BCCH’s team did a wonderful job. They created a piece which she is very proud and cherishes. It is only one of the many ways she is able to help BC Children’s Hospital achieving their goal of caring for and saving children. I also want to point out that the black and white photos in the montage are from Jane Eaton Hamilton, an amazing photographer from Vancouver who donated her time to photograph Ella and her family on March 27, 2009 for Now I Lay Me Down to Sleep.

You can view the interview here (low res version): Baby Ella_Global 2009

And right here, you can listen to the 2009 interview Yolaine gave to Ocean Radio to help raise funds for BCCH in Victoria, just weeks before the TV interview was filmed and 6 weeks after Ella passed away: Yolaine Ocean Radiothon 2009

On September 7, 2009 on Ella’s 25th-month birthday, Yolaine was interviewed live on a radio show broadcast out of Quebec City. The show is called Spécimen rare (Rare Specimen) and addresses one rare disease per show. It is broadcast locally, on the web and is also archived online.  This link is to season 2 – I was the first guest of the season. The interview can be found under Emission 1. Just look for Ella’s photo on the top left of the page where she plays with her stuffed monkey King Louie.