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Home for the Holidays: Cyndie and Taryn's story.

The following letter from Faith Bodnar to prospective BCACL donors tells the story of how BCACL advocated to ensure that Cyndie Richdale's daughter, Taryn, was able to return from the hospital to live at home with the supports she needed.

Cyndie Richdale is a mother of three. One of her daughters, Taryn, is 24. Taryn is charming, unfailingly cheerful and a joy to be around. Taryn also has an extremely complicated and challenging medical background. She has Spina bifida and hydrocephalus and has been admitted to the hospital more times than her mother can remember.  She has undergone 40 surgeries. Taryn also has a condition in her brain called Arnold–Chiari malformation that can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea and problems with  coordination.

That’s why Taryn is fed through a tube in her stomach and needs a ventilator to breathe at night. In fact, Taryn has been experiencing trouble breathing for the past 10 years and her ability to clear her airway was decreasing. One day this past Spring, when she turned blue from lack of oxygen, Taryn was rushed to the hospital.

Taryn underwent a tracheostomy, a surgical procedure that allows her to breathe through a tube in her throat. The tracheostomy also allows her staff and her mother to suction her airway when she needs it.

Soon after the operation, it came time for Taryn to go back home. But Cyndie, her mom, knew that she couldn’t come home unless she received additional funding from the provincial government so that she could hire what is called “awake night staff”. This would mean that her daughter would have her airway suctioned at night whenever it was needed. She couldn’t risk taking Taryn home without the additional funds. It was a matter of life or death. Cyndie knew that because she is a registered nurse.

So Taryn’s mother made a brave decision. She refused to take her daughter home from the hospital without the funds she knew were needed.  And despite growing pressures from the hospital and others, Cyndie continued to refuse. “My daughter’s health and safety and life were at stake,” she says. “I knew that what I was doing was the right thing.”

Even when options like a nursing home or other institutions were “offered”, Cyndie stuck to what she knew was right for Taryn.

Cyndie did two things that won her a victory in the end. She held firm. And she contacted the British Columbia Association for Community Living. Along with Cyndie, I met with and talked to many senior hospital and government representatives. When that wasn’t enough, I contacted the Minister of Social Development. “Taryn Richdale will die in an institution,” I said. “She will never receive what she needs in places like that. She will only get the loving care and attention that she deserves and needs from her family in her home. Her family wants her back home and Taryn yearns to go home.”
We prevailed. After 44 days in the hospital, Cyndie took Taryn home with the funding she needed to care for her daughter 24 hours a day.

Cyndie was glad for our help, as you can imagine. “BCACL was my rock. I don’t know what I would have done without them,” she says. “I’m not religious or anything, but it was like an angel came down and sat beside me and took all my troubles away. They gave me guidance and strength and the ability to cope, and helped me get through the situation.”

I am writing you today to ask that you send a final year-end gift to the British Columbia Association for Community Living. I fear for the families like Cyndie’s who get worn down by the system and give up.
I know that you believe that we are all best nurtured by our family who knows, loves and honours us for who we are. So please make a donation today. Your gift will help us continue inspiring a world where everyone belongs.

Sincerely,

Faith Bodnar
Executive Director, BC Association for Community Living