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11-year-old Nate Giddens, loves being in the water, music and going to school. His mum Beck, says that he has quite the personality, and that she often catches him rolling his eyes at her if he thinks she’s being embarrassing.
But throughout his life, Nate has had constant health complications so requires 24-hour care for his basic needs.
Nate has Lissencephaly which means he has uncontrolled seizures. He is nonverbal, has no head control, cannot walk and has trouble sucking and swallowing.
With Nate often in and out of hospital, mum Beck says that the family focusses on enjoying each day.
When they returned home after his diagnosis as a baby, “I was horrified to think my child was going to die in two years,” said Beck.
But 11 years on, “we take it day-by-day. To me I think he could go another 10 years but you hear of these kids passing in their sleep. His heart could literally just stop, it has its own brain, it could happen at any time,” explained Beck.
The Giddens family turned to Very Special Kids for Nate’s respite care at the Hospice and for emotional support.
Beck said that having access to Very Special Kids Hospice makes everything easier and it’s always great to see the familiar faces.
Nate stayed for 16 days when the family went on a trip to America. “He loves it there and I feel very confident leaving Nate at the Hospice,” said Beck.
Beck talks to her dedicated Family Support Worker, Meg fairly often, “she’s been great, we have a lot in common, it’s so nice to know there’s easily accessible support,” she explained.
Nate’s older brother Jack, 13, has enjoyed attending the Very Special Kids Sibling Support Program.
“He’s missed out on having a brother and having fun with him, he’s missed out on quite a lot. It’s hard for him to watch other people with their healthy siblings,” said Beck.
To help us continue to children like Nate and his family, please text ‘PIGGY’ to 0455 021 021 to donate. Or you can donate online here.
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