Cassandra's story

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“Very Special Kids prolonged the life of Cassandra... staying there at the hospice made me realise that it’s possible to enjoy life even if my daughter has a complex condition. There’s still hope.”

- Jhosa, mum of 4-year-old Cassandra who has spinal muscular atrophy

When baby Cassandra was diagnosed with spinal muscular atrophy at 2 months old, her parents Jhosa and Aaron were told she “won’t last the year”.

For the doting family, it is nothing short of a miracle that their remarkable little girl celebrated her 3rd birthday in September 2022. 

“For us, she’s, our superhero. She keeps fighting for her life,” Jhosa and Aaron share.

After her diagnosis in hospital, the family was referred to Very Special Kids and offered 24-hour end-of-life care at the Very Special Kids hospice in Malvern. Cassandra’s condition improved and she is still with us today.

“I think moving into Very Special Kids hospice is one of the best decisions we’ve ever made for Cassandra. It prolonged Cassandra’s life. We’re so lucky to be part of Very Special Kids.”

The family have celebrated each of Cassandra’s milestones along the way.

“She’s getting stronger and stronger every day. That’s a milestone that we didn’t expect. It’s also because of the help of the team that supports her — the nursing staff, physiotherapist, the OTs and the speech pathologists.”

 “I can say it’s a miracle. Our daughter is a fighter.”