The organization Everyone Loves Little Angels TM, also known as ELLA, was created as a legacy for my daughter, Ella Dupont Bedassie. Ella was 7 months and 20 days when she passed away from respiratory failure brought on by what we did not know at the time was a rare disease: Periventricular Nodular Heterotopia, Ehlers Danlos variant (PVNH4).
Ella, my little bundle of Quebec / Trinidadian joy, had been afflicted with end-stage emphysema most likely all her life but it was only discovered days before her 3rd month birthday. And even though Ella suffered from an incurable disease, you would never have known it. She was and still remains (in my head and in my heart) a vivacious little girl with a smile that spread from ear to ear, feet that danced up in the air to the beat of her own drums and fingers that quickly wrapped themselves on daddy’s fingers to hold or mommy’s hair to twirl.
Ella was hospitalized at BC Children’s Hospital (BBCH) three times, totaling 147 days. The first stay was 4 days, the second stay was 27 consecutive days where I was with her 24/7 and the last one in ICU spanning over 4 months at 116 days (104 of which were in ICU). We were fortunate that we lived minutes away from BCCH but it quickly became evident to me that most families do not have that luxury.
When Ella was battling for her life, it was clear that Ella’s mission and my mission when Ella would be healthy would be the same – to learn as much as possible about her condition to help other families affected by it and to improve the quality of the lives of children and their families having to stay in hospital because of chronic conditions.
After Ella’s passing, there was a new path of the mission that added itself to the two others: to help bereaved families cope with the unbearable loss of a newborn, baby or child.
This is for the little angels – the ones that are sick and the ones on their clouds.
This is for Ella, so that her death is not in vain and her memory keeps on living, forever.
In 2011, ELLA’s Wish raised $7,972 to allow one very special wish to be granted to a child via make-A-Wish Foundation of BC and the Yukon. Read the article about the annoucement of who benefitted from ELLA’s Wish’s efforts or view the video that was broadcast on CTV News, bringing Mary Ella and her family some hope and definitely joy, in memory of Ella Dupont Bedassie.
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