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Meet the Gaythorpe family - the family face of this year's Piggy Bank Appeal. The Gaythorpes represent more than 800 Victorian families who rely on Very Special Kids - and the reason we need you to give generously to the Piggy Bank Appeal.
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L- R William, Alex (mum), Matthew, Andrew (dad) and Ben.
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Six year old Matthew Gaythorpe was born with a rare genetic condition called Autosomal Recessive Polycystic Kidney Disease (ARPKD), a condition that damages his liver and causes his kidneys to fill with cysts.
He also suffers from hypertension (high blood pressure), nephrogenic diabetes insipidus (which means his kidneys cannot concentrate urine) and narcolepsy.
His complex conditions and the cocktail of medications used to manage them place Matthew’s organs are under constant pressure. Eventually, he will need kidney transplants and possibly a new liver.
Like many families caring for a child with a life-threatening illnesses, Matthew’s parents Alex and Andrew say the stress and uncertainty has had a profound impact on their lives.
“I don’t know if Matthew is going to be with us in five year’s time and having to deal with that over a long period of time wears you down,” explains Andrew. “I think the only way we will get through it is if we stay together as a family. Any support we have to help with that – which is what Very Special Kids gives us – is worth its weight in gold.”
The Gaythorpes rely on regular contact with their Very Special Kids family support worker, Heidi – “I’ve rung her plenty of days when I’ve just felt like I can’t cope,” says Alex.
“I think that one of the best things about Very Special Kids is that it’s about helping families of children with life-threatening illnesses,” adds Andrew.
Matthew’s older brothers, Ben (11) and William (9), attend sibling days at Very Special Kids where they meet other children going through similar experiences.
Alex and Andrew now feel ready for Matthew to have his first stay at Very Special Kids House, a purpose built children’s hospice with 24 hour nursing care.
“It will give us the chance for a true break,” said Alex.
“You can’t do it alone,” adds Andrew. “That’s why the Piggy Bank Appeal is so important for families like ours. It’s very, very tough and you need support. For the community to get behind Very Special Kids means we don’t have to do it alone.”
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