Living with Epilepsy – Joseph’s Story

‘There is still a lot of joy to be had in life, I think there’s a tendency to look on people with disabilities or people with illnesses and focus on how they’re different or the negative. It’s only societies attitude that limits us and I just can’t believe what a joy Joseph has been for us.’ Fiona Stewart, Joseph’s mother.

Joseph lives at home with his parents and older sister in regional Victoria, Australia.  Joseph’s mother Fiona experienced a normal health pregnancy with Joseph and normal birth with Joseph appearing really healthy when he was born.  At around 3 months old he appeared to get sick with a cold and Fiona took him to the GP and did what you would normal do to treat a sick infant.  When Fiona saw him having a massive seizure that just kept going, she rang an ambulance and was rushed to the hospital where Joseph was placed in intensive care for a couple of days.

It was a difficult period as from that time they were in and out of the hospital constantly and with their older daughter being only 3 years old and having just moved to a new town, it was extremely stressful. This was made even more difficult as they didn’t have a firm diagnosis, he obviously had a very severe and serious epilepsy syndrome but they weren’t able to get a clear prognosis, everything was very vague.

‘I think we held onto a lot of hope in the first year that he might suddenly stop having the seizures and then begin to develop normally, so it was actually very difficult that his disability unfolded quite gradually ‘ Fiona tells us ‘Joseph has an Early-Onset Infantile Encephalopathy, basically he has very severe seizures’

‘When Joseph first became ill when he was baby we knew then what was happening to him at that time was life threatening, he was in intensive care, he was a tiny baby intubated in intensive care having thousands of seizures, as he got a bit older, probably from about two we got better seizure control so he wasn’t in the hospital all the time, so I think in that period I probably thought ‘ok, I have a boy who’s disabled, he has epilepsy but I stopped thinking about it I guess. it’s not life threatening all the time, you just slip into everyday life but then as time went on, he’d get pneumonia or just other medical issues that are associated with his epilepsy and everything, it began to dawn on us that he is still extremely fragile.’

‘I can’t remember who first suggested Very Special Kids to me, and I looked at it and I spoke to his pediatrician about it and I thought ohh, and I said it’s for children with life threatening illnesses and she sort of said that Joseph would be classed as having ‘life threatening’ illness,  that was a difficult period actually.

‘The very word ‘palliative’ can raise all sorts of anxieties in families because they associate that with terminal care, in other words the last few days of life.’ Dr John Collins, Children’s Palliative Care Specialist.

Joseph and his family receive essential palliative care services from the Royal Children’s Hospital, Melbourne and Very Special Kids.

‘Even though it was very confronting to have him accepted into Very Special Kids at first, or to have it acknowledged that he has a life threatening condition at first, now I feel really relieved to be hooked into a service where people really understand and I don’t just go to appointments I’ve got a group of people around me now all the time, it’s like a safety net actually, you feel like someone’s got your back to help you, and if your struggling there’s someone there.  It isn’t jsut the respite house it’s the local worker.  It’s really invaluable.’ Fiona Stewart.

Thank you Joseph.  Thank you Fiona.  You remind us about what’s important in life and we are so thankful for your participation in Little Stars.