Constant care

Twelve-year-old Kaspar is a very playful child that enjoys art and music therapy. He loves to feel the rumble of his wheelchair beneath him and to be around his large extended family.

Kaspar however, lives with a rare birth defect and life-threatening illness, which creates constant concern for his parents Christine and Mario.

Diagnosed with Agenesis of the corpus callosum, a congenital disorder, only three months after he was born, Kaspar now suffers from cerebral palsy and uncontrolled epilepsy. He is non-verbal, fed with a tube and wheelchair bound.

“When he was eight-months-old doctors said he wouldn’t reach 18. It was so hard to hear. It took a few years of counselling and support to get us pragmatic and realistic” explains Christine.

Kaspar’s siblings Owen (nine) and Ivy (six), also worry about their big brother constantly being sick.

Very Special Kids has supported the Ferra family for over eight years and the relationship built has meant that they can recharge their batteries and have a little normality back in their life. Very Special Kids provides Victoria’s only children’s hospice where children with life-threatening conditions can receive specialised 24-hour care in a home-like environment, and families can have some much-needed respite.

“I myself find it all really overwhelming sometimes but I’m so lucky that my husband and I have such a good relationship and are on the same team. It’s really great to have some respite with Very Special Kids and have time to focus on the little ones” says Christine.

“When you have a child that has high medical needs, you often feel scared to leave them in case they pass away, that’s a reality we live with. But I know my child will get the most amazing care and support that is probably better than what I can offer at home, at Very Special Kids.”

Having a sibling with a rare genetic condition can deeply affect a child. The Very Special Kids Sibling Support Program was created to provide unique activities where siblings have the opportunity to meet other siblings in a caring and safe environment. Owen has been participating in the program for four years and Ivy for two, they both have the opportunity to meet other siblings struggling with similar challenges.

“In a way, the kids all know Very Special Kids is the common denominator. They love the therapy, it’s hidden in play and it’s all about building resilience and friendships. It really helps with their well-being and makes them feel special.”

The Ferra family are also in constant contact with a Family Support Practitioner from Very Special Kids who provides professional counselling and therapy to not just Kaspar’s parents, but Ivy and Owen too.

“Heidi has been a major support for our family, especially when Kaspar got really ill and almost died, she was able to debrief with the children. We are so grateful for her constant help”.

“Death is always in the forefront of your mind when you have a child with high medical needs, but Very Special Kids definitely helps take a little weight off our shoulders.”

“Very Special Kids has made a huge impact on our family and also made our ability to explore the world better. Kaspar’s needs are met to amazing standards” says Christine.

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