Securing the anchor for the Evans family
15-year-old Jack Evans is a huge Hawthorn supporter, loves exploring Melbourne, playing with his younger brothers and talking circles around Very Special Kids Hospice nurses. However, when Jack was first born, his family were told he wouldn’t live past two years old.
Spinal Muscular Atrophy is a genetic disease that meant Jack was very sick as an infant and still requires care 24 hours a day to meet his needs. Jack is in a wheelchair for posture and mobility, is tube-fed, and needs assistance with breathing.
Jack had his first stay at Very Special Kids Hospice when he was two-years-old and since then has stayed at the hospice more than 50 times. This allows the Evans family to do things they normally couldn’t do, including getting a full night’s sleep.
Mum Lisa Evans says their relationship with Very Special Kids goes beyond the practical support they get through respite care at the hospice.
“The staff at Very Special Kids are an anchor for us. In 2014 Jack was very sick and we thought he would need to go to the hospice for end-of-life care. The staff were very understanding. They get the highs and the lows and have known Jack since he was a child,” she said.
“For Jack going to Very Special Kids is his home away from home. He feels very safe there – it’s a sanctuary for him.”
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