Paddy's Story | Julia's House

16 year old Paddy’s condition is a bit of a mystery. He was born with intractable epilepsy (a complex seizure disorder that doesn’t respond well to treatment). Then, at 10 weeks old he had a period of continuous seizure, which led to brain damage and quad cerebral palsy. As a result Paddy is non-verbal and has learning disabilities. His seizure disorder remains the biggest threat to his life as he has multiple seizures daily.

Paddy’s mum Gemma explains how Julia’s House has been there to help.

“Julia’s House has supported Paddy and our family since he was just a year old. I was really scared when a support worker suggested we were referred to Julia’s House. I heard the word hospice and my mind went to the Macmillan unit my Grandma had passed away in the year before. I felt adamant that Paddy wasn’t dying any time soon so didn’t need a hospice.

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“Thankfully, I met another parent around that time whose daughter was under their care and she explained that Julia’s House wasn’t anything like I’d imagined. With gentle persuasion we went along for a visit and instantly felt at ease and reassured. I still remember the first stay and play group I took Paddy along to. Walking in and seeing a room full of children just like Paddy, I felt a wave of relief that I’d found a new tribe of families I could finally relate to. The other parents I met on that very first day are still friends now 15 years later.

“Paddy has grown up with the support of Julia’s House, attending the hospice for day and overnight sessions or having his team of carers come to us to look after him. They’ll often take Paddy out on the bus into Christchurch for the day which he loves. Julia’s House has been such a massive part of Paddy’s childhood. His condition has changed over the years, he’s had several major surgeries and whenever he’s needed extra support, Julia’s House has always done all it could to help provide it.

“Paddy’s siblings have all used the sibling support services over the years. His little sister Daisy has really benefitted from the one to one visit she has with Maria. A couple of years ago, when she was eight years old, she really started to struggle with anxiety, having witnessed Paddy being taken away by ambulance lots of times. Julia’s House was able to help, by funding counselling sessions for Daisy. She was able to talk about her worries and learn ways to manage her emotions. Daisy and her step-sister Maisie have also attended a residential trip to the outdoor activity centre at Avon Tyrell and are going camping this summer. They’ve got a whole group of friends now - other siblings who can all share experiences and support each other through the years. I’m so grateful for that.

“Having a disabled child is extremely isolating, especially one with a life-limiting or life-threatening condition. Friends we knew before drifted away when Paddy was born as they just didn’t know what to say to us and how to act around us. Julia’s House accepted us into its amazing community all those years ago and have had their arm around us ever since, introducing us to new friends we share our journey with. We’ve sadly lost a few of Paddy’s friends along the way, which is always devastating, but seeing how Julia’s House springs into action during those difficult times give us some comfort to know that if the time comes for Paddy, we know we’ll be fully supported. I dread to think how our life would be without the support they’ve given us through the years.”

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