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Remembering Ted
August 23, 2024
Seeing the delight the flashing lights and sirens from a police car can bring to a child’s face has driven members of Hastings Police Station to visit Very Special Kids Lord Somers Camp for the past two years.
For one senior sergeant, the connection to Very Special Kids is a lot more personal. Bereaved father Antony knows first hand how important the support provided by Very Special Kids is when a family needs it most.
At only 10 days old, Antony’s son Ted was diagnosed with Pyruvate Dehydrogenase Complex (PDC) deficiency, a rare mitochondrial disorder that impacted his ability to metabolise carbohydrates. The condition can cause difficulty breathing and countless seizures.
Initially, doctors thought Ted had suffered a brain injury. It was an agonising process for his son to be diagnosed with PDC, as it was very rare in someone so young. He and his wife, Michelle, were emotionally exhausted and unsure what the future would hold for their baby boy.
I just remember feeling so much fear. We were both first time parents and you have this Hollywood idea of what having your baby is going to be, and it wasn’t that at all.
Ted began a specialised treatment plan and at nearly two months old, was moved to the Royal Children’s Hospital, where Antony and Michelle were first introduced to Very Special Kids.
Having a brand-new baby can be a daunting, exhausting and confusing time, let alone when that child is very sick. When Antony needed a moment to breathe, an escape from seeing his son connected to tubes, he knew his dedicated family support practitioner at Very Special Kids was only a phone call away.
“The knowledge and the genuine empathy that comes with the people at Very Special Kids, knowing what you’re going through, makes the difference; it just makes it relatable and more sincere and genuine.”
While Ted did eventually go home, his condition sadly began to deteriorate after his first birthday.
“Through Ted’s life we had a number of occasions to call an ambulance or rush trips to hospital due to seizure activity that we couldn’t bring under control with his medication,” Antony says.
“Around his first birthday, we weren’t really sure what it was, but it appeared to us like he’d had a stroke. And it turns out he’d had a metabolic stroke.”
After the metabolic stroke, Ted wasn’t the same. He lost muscle tone in his face and down the right side of his body.
“And in those final days, the last seizure, we knew he wasn’t coming out of hospital.”
Ted sadly died at 14 months of age in July 2022. Very Special Kids has remained by their side every step of the way.
That is where the value is for Michelle and me.
We don’t feel alone, we don’t feel like we are doing this by ourselves, it is incredible.
Sadly, Antony is one of many parents who have experienced the death of their child. When asked what his advice would be to families who might be going through a similar experience, he shares that grief doesn’t have a timeline, nor will it feel the same for everyone.
“Whatever emotion you are feeling as you go through that, it’s valid, it’s not wrong to feel like that,” he explains.
“You’re in a very small group of people that go through these sorts of things and there’s no right or wrong way to feel during it. So whatever emotion you’re feeling, it’s not wrong.”
Antony says his involvement at Very Special Kids Lord Somers Camp reminds him of how much Ted would have loved the camp, being outdoors and in nature.
“Ted was just the happiest little kid, always smiling…He loved being outside, and he was always fascinated by the trees blowing in front of the sky,” he reflects.
“It’s just an incredible coincidence that not long after I started at Hastings Police Station, the email dropped in about going to Lord Somers Camp with Very Special Kids. And I went, ‘you’re kidding me’, and I actually couldn’t wait to go there.
I arranged little cardboard police cars…and I tried to get things that kids who might not have great vision might be able to enjoy the tactility of.
It gives me comfort to know that I can perhaps help those kids and those families that are going through what we went through.
We received incredible support from Very Special Kids, we wouldn’t have got through it without it, and so to be able to just pay that back, I think, is just good karma.”
Hosted by Lord Somers Camp and Power House, this weekend away offers Very Special Kids families a much-needed opportunity for fun and relaxation by the sea. The camp makes fun accessible to everyone and is a place where kids of all abilities can choose their own adventure, while parents rest and recharge.