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Alfie’s story

October 9, 2024

Three-year-old Alfie was born with global brain damage from a lack of blood in utero.

 

This injury resulted in severe cerebral palsy, vision impairment, very limited mobility and epilepsy, among other conditions.

 

Her conditions require 24/7 care, including the administration of 15 medications three times a day and an endless schedule of appointments with physio, occupational and speech therapists, plus frequent hospital visits.

 

But as her dad, Tim, reflects, Alfie is so much more than her life-limiting conditions.

“Alfie has cerebral palsy at the severe end of the spectrum.

 

But I think Alfie’s not just those things: she’s also a three-year-old kid who is incredibly joyful. She loves being the centre of attention. She’s funny. She loves painting, she loves drawing, she loves smells, she loves her brother and sister, and she’s super determined. She wouldn’t be here if she wasn’t.”

Alfie’s family started receiving support from Very Special Kids in 2022 and describes the introduction as a pivotal moment that changed their lives for the better.

What we love about Very Special Kids is it’s not just another hospital visit. This is a place where the focus is on enjoyment and fun. It is a joy for her to be here and we feel very privileged for that to happen.

Not only does Very Special Kids House offer Alfie a safe and supportive environment to have fun, but it also means Tim and his wife Kristiarne have the opportunity to recharge and spend quality time with Alfie’s siblings.

Outside of the hospice, Tim and Kristiarne also have access to counselling and emotional support.

 

“It’s been game-changing for us, because through challenging, often dark times, our family support practitioner has been a sound board.

 

They’ve been an incredibly generous and knowledgeable counsellor, and have guided us through a lot of, frankly, pretty crap times.”

While Alfie’s future remains uncertain, Tim and Kristiarne are endlessly grateful for the gift their daughter has brought to their lives.

 

“Alfie has changed our lives for the better, and institutions like Very Special Kids have made the journey, initially bearable and now ultimately rewarding and enriching.”