FOR the next three weeks, Jo Srivastava and her family call Bear Cottage in Manly home.
Along with her husband Nitin, the couple are there with their two daughters Uma, 5, and Claudia, 20 months, for respite while Uma undergoes treatment for spinal muscular atrophy (SMA).
Uma’s genetic condition means the Canberra family come to Sydney very regularly for medical appointments.
“Children with SMA typically do not survive more than two [years]but she is five years old and she is doing very well,” Ms Srivastava said.
“All she needs is a wheelchair, she doesn’t need help with breathing and feeding.”
There is a chef who cooks and it’s just nice to meet other families who are going through similar situations.
Uma has a team of doctors caring for her, and among her treatments are a lumbar puncture every four months, hydrotherapy, physiotherapy and monthly check-ups to monitor her condition.
“It affects every aspect of your life, even the type of care you conduct, that needs to be changed,” Ms Srivastava said.
Bear Cottage is NSW’s only children’s hospice, and for families like the Srivastava, staying there is free.
Uma’s condition means it is very difficult for the family to go on holiday, and Ms Srivastava said staying at the Cottage, which is a stone’s throw from the beach, felt like a holiday.
“There’s a chef who cooks and it’s just nice to meet other families who are going through similar situations,” she said. “You don’t have to explain yourself, people understand.
“It’s respite for us, but many children are here at the end of their lives.”
When not at medical appointments, the Srivastava family were able to use the Cottage’s wheelchair-friendly ramp to the beach for picnics.
Uma and Claudia also adore the Cottage’s therapy dog called Beau.
Mother’s Day at Bear Cottage
This Mother’s Day, Bear Cottage is hosting its fifth annual Mother Support Program, and Ms. Srivastava will be part of the special invite-only session for mums who have stayed at the Cottage.
The program starts on Sunday and the five-day program will see mothers offer a range of treats including: yoga, art therapy, drumming circle, crafts, picnic, cooked meals by a chef, an appointment with the hairdresser and a massage.
Bear Cottage licensed music therapist Annabelle Keevers said the program not only provides mothers with options for care, but gives them the opportunity for some much-needed respite.
“The mothers really bond and often they will stay in touch after they’ve left because it helps build their own network,” she said.
Bear Cottage is available for every family caring for a child with a life-limiting or terminal illness. Donate here.
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