Little Stars – Childhood Epilepsy – Joseph’s Story
We have just released Joseph’s Story as part of our Little Stars Indiegogo crowd funding campaign.
About Joseph’s Story by Fiona Stewart
“The most surprising thing I have learnt about paediatric palliative care is that it is not just about endings. Palliative care is really a steady arm to lean on: it supports you to make your time together the best it can be, and it helps families take some control back over their lives.
When our son Joseph was diagnosed with a severe epileptic condition when he was only three months old, we had little idea of what the future would hold for him. We did know that our little boy was struggling every day with a condition that did not promise a long and healthy life. Despite this, Joe continued to meet every day with a smile and a genuine and infectious joy at being alive.
Despite his frailties, he also demonstrated a strength and vigour at times that made something like paediatric palliative care seem alien to our daily lives; but caring for an ill child can be emotionally and physically exhausting and you come to realise that you need support. Paediatric palliative care services that provide sensitive and supportive respite care go a long way to keeping a tired family functioning.
In February 2014 Joseph became critically ill and spent 8 weeks in RCH Intensive Care. During this time we began to realise that we might actually lose him after all, and our world began to spin out of control. Palliative care actually empowered us, at the most difficult of times, to put our son first and to make decisions that would honour him and his place in our family.
We are so lucky that we were able to take Joseph home with us and today he is doing well. So once again we take each day at a time, and learn from Joe’s pleasure in the everyday joys that life brings. But palliative care services continue to be there for us, like that steady arm to lean on, so we feel secure that we can face whatever tomorrow brings.”
Joseph’s Story is part of the Little Stars film project.
The filmmakers are fundraising to complete this project and need you help.
The campaign is running for another 7 days at https://www.indiegogo.com/projects/little-stars
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