Julie reached out to me to speak about those frantic final days and hours at Montreal’s Sainte-Justine Hospital where Kate’s doctors tried desperately to extend her life — an attitude that Julie now believes made it difficult for her, her partner Brian and Kate’s older brother Jack to say goodbye.

Kate was born with a disease called SIFD, sideroblastic anemia with B-cell immune deficiency, periodic fevers and developmental delay. SIFD is so rare that Kate was the first person on the planet to be diagnosed.

Julie says the pivot from trying to save Kate to watching her begin to die came suddenly and unexpectedly during a weekly checkup in Ottawa.

She doesn’t know if the doctors and nurses realized that Kate only had a short number of days to live. If they did, Julie says, they didn’t discuss it with Brian or her, despite knowing the family well.

Now, two-and-a-half years following Kate’s death, Julie is speaking out about what she thinks is an unmet need among parents of fragile kids like Kate: to help prepare them for the death of their child.

Read more on the CBC.