A Nelson infant who suffered from a rare terminal illness has died. Anaya Cassin-Potts passed away Sunday at BC Children’s Hospital, aged 27 months.
She had Krabbe leukodystrophy, a brain disease that results in a loss of motor skills, and the ability to smile, laugh, and play.
Anaya’s mother Camara Cassin wrote in her blog that the trouble began a week ago Monday, when Anaya began experiencing “spontaneous nerve pain” while they were in Salem, Oregon. She was taken to a local hospital, where a breathing tube was inserted, and she improved.
However, on Sunday, Cassin wrote: “Time is short. Anaya’s lungs stopped working. I gave her mouth-to-mouth. We took her to the hospital, hoping it was pneumonia and treatable. They intubated her in order to keep her alive. They took excellent care of her.”
Anaya and her mother were transferred to BC Children’s Hospital, where chest x-rays showed Anaya could not expand her lungs. Her father Brent and sister Solara joined her there.
“I held my little love for hours while she was on life support,” Cassin wrote. “I kissed her face, her fingers, her toes, her lips. I wiped her tears from her eyes. I couldn’t stand forcing her to stay. I wanted to set her free. The hardest part was waiting for everyone to get there. When the family was united we made the decision unanimously. We removed her bi pap mask.”
Cassin says Anaya sighed and they took turns holding her. They gave her a bath, read her a book, and played with her.
When Anaya’s breathing became more laboured, Cassin lay down on the bed and placed her daughter over her heart.
As her daughter took her final breaths, she “let out the most beautiful baby sigh I ever heard. There was no pain in it. It was the sound of freedom, relief, joy.”
The family huddled in the hospital bed, saying goodbye.
Anaya’s struggle drew widespread attention when her mother sought mothers to donate breast milk — the only nutrition Anaya could comfortably handle — and received responses from around the region and across the country.
An online memorial service is planned Wednesday or Thursday.