Sully's story | Julia's House

Sully's Mum, Lucy, shares her family's story.

"When Sully was born, he seemed perfectly healthy. He wasn’t feeding well and struggled with a lot of sickness and acid reflux, but these early symptoms were all just put down to normal newborn problems. Even his heel prick blood test came back fine. But when Sully didn’t hit any of his baby milestones, I began to get worried it was something more."

Then when Sully was four months old, he started to have seizures. Everything escalated from there. The first time it happened, he had three seizures over five hours. It was terrifying. Our other son Reuben was only two years old then and he saw it all happening. It was frightening for him to see me so distraught and to watch his little brother taken away in an ambulance. Afterwards, he was worried to come and see us in the hospital because it had scared him so much.

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I thought maybe Sully had epilepsy because I have that too, but instead tests showed he had high lactic acid in his blood stream. It took another six months before we were finally given a diagnosis.

We were told that Sully has a very rare and life-shortening condition called pyruvate dehydrogenase deficiency (PDH), which causes his lactic acid to build up to dangerously high levels. There are just a few hundred cases in the whole world.

No-one knows much about Sully’s condition, so we don’t know how long we have left with him. Every time could be our last time together.

Sully can't produce any energy himself, so even drinking a bottle of milk can make him exhausted and go completely limp. Now he’s nearly two and is pump fed through a tube into his tummy every four hours to make sure he doesn’t get dehydrated or sick.

He also suffers from seizures, low muscle tone, and dystonia, which causes painful muscle spasms.

He gets poorly very easily and we do sometimes feel like we live in hospital – we've been admitted so often that we’ve lost count.

FINDING STRENGTH

There’s currently no cure for Sully’s condition, but when he turned one, he was put on a special ketogenic diet to help, which means he can’t have any sugar or carbohydrates. The diet can cause brittle bones and there's a risk of organ failure, but it’s the only thing that boosts Sully’s energy levels.

It took Sully such a long time to even raise his head, but after being on his new ketogenic diet for just two days, he rolled over for the first time. I cried my eyes out because it felt like a miracle.

Everyone was amazed when he found the strength to sit up by himself – he keeps surprising us with what he can do.

He is still very up and down from week to week. Even something as simple as a cough or cold can make Sully really poorly and set him back.

Last week, when our Julia’s House nurses and carers were here, Sully was trying to step towards them and holding their hands. It was so wonderful. But today, he’s struggling to keep his head up and he needs cushions to help him sit.

When I wake up in the morning and I see Sully smiling back at me, I’m happy. If I can’t see Sully for any reason, that’s when I panic – because I know one day he won't be here.

We just have to hope that we have a lot longer with Sully, stay positive and hold on to each moment of joy that comes.

VERY BEST CARE

You never expect you’re going to need a place like Julia’s House when you decide to have children. Before having Sully, I’d never experienced this world before. I’d hear the word hospice and assume it was a sad place. But it’s lovely here. I feel like I know everyone, and Sully gets so much attention.

I can feel very lonely and alone looking after Sully. People feel sad for you, and you get stared at when you’re trying to do something simple like go for a coffee.

We have wonderful family and friends who love Sully so much. They want to help us, but they’re too scared to look after him because of his feeding tube or in case something was to happen.

With Julia’s House, I feel like I can breathe again. It doesn’t matter what the day is like or what I’m going through, I’m not on my own – and that’s priceless. If I'm worried about anything at all, I know I can call Nurse Molly and she’ll be there to reassure me or give me advice. That takes a huge weight off because I do question myself a lot and worry if I’m doing things right.

When the Julia's House nurses and carers are looking after Sully, I know that he is getting the very best care. I can take my eyes off him, and I know I don’t have to worry. I don’t feel like I can do that with anyone else, it’s the most amazing gift.

I can’t drive because of my epilepsy, so the fact that Julia's House also visits us at home is the only way I can have regular respite. I actually feel like I can relax for once when the nurses and carers take over – Sully gets all the attention he needs, and I get to have a nice hot cup of tea.

When Sully is in hospital for a few nights, the Julia’s House carers will even come out to visit us in hospital too. They’ll watch Sully so I feel okay to leave his bedside and have a much-needed shower, or they might take Reuben off to play when I’m getting an update from the hospital doctors. With Jake having to work, it makes the world of difference to have someone I know and trust there to support me.

THERE FOR THE FAMILY

It’s hard to feel normal when you have a little one with complex care needs. I can’t just pop out to a soft play because Sully could catch an infection or virus, and I’d need to take seven bags packed with his back-up meds and milk. But when Julia’s House comes, I can just do simple things that make me feel normal.

The other day, Jake and I got really excited because we got to put our clean washing away! It sounds really silly, but I never have time to sort everything into drawers after I’ve washed it. Just to have that time to tidy-up and to see my bedroom floor again made me so happy.

Julia’s House helps us in so many unexpected ways – they don’t just look after Sully, they look after all of us. The support they have given to me and Jake, and to our four-year-old son Reuben is just incredible.

I’ve had the most amazing massages from the Complementary Therapy team and I’m hoping to have free counselling through the family support team too. Some days are great and positive, but some days I don’t know how I’ll make it through the next hour – talking really helps me and I don’t want to put all my worries on Jake, so to have that support is vital for me.

There's even a Family Support team at Julia’s House that helps with applying for funding and anything else you might need. For example, we recently received a £300 grant for sensory equipment that will make the world of difference for Sully at home. And the lovely Family Support Worker, Emma, is trying to help us find a car seat that will be so much better for Sully than anything we could buy on the high street. Completing a task like that feels impossible when all your time is taken up caring for your seriously ill child.

TIME FOR REUBEN

Reuben loves the activities they have at the Julia’s House hospice, and he gets so excited when our Sibling Worker Tracey comes around to see him. They both have tortoises as pets, so there was an instant bond between them.

The older he gets, the more I worry about Reuben and the things he’ll miss out on because of the constant attention we have to give to Sully. When Tracey visits us, it’s time and attention just for Reuben to play or do whatever he feels like – and that’s so precious.

Reuben has already been through and seen so much more than other children his age. On Reuben’s third birthday, Sully was very poorly and he had to go into hospital. We had to have birthday cake on the ward and cancel his party.

Reuben’s also very protective over his little brother – he’s like a mini-me, always worrying about Sully and checking on him. He’ll give Sully 20 kisses before he leaves the room and is always telling us he loves us. It’s what upsets me the most and makes me anxious for when Sully’s not with us, because of how much Reuben adores him and how close they are.

Sully’s condition is hereditary, and I recently found out I’m a carrier of the gene. There is a one in four chance that any children we have will be born with PHD. We’re hopeful that Reuben doesn’t have the same condition – he hasn’t shown any of the symptoms – but we don’t know yet and there is still a possibility that he could. He’s so happy, it’s too scary to even think about that.

SPACE TO BE ME

Sully doesn’t settle well at night. Because he’s still so little, he can’t tolerate bigger feeds and needs to be pump-fed milk every four hours. We can go for longer at night now, but by the time we've sterilised his equipment, we’re in bed at around 1am and back up again at 5am.

Sometimes we only get an hour of sleep. We’re so exhausted, we’re too tired to even talk to each other.

I actually got an email from Julia’s House the other day to let me know that Sully’s going to have an overnight session at the hospice. When I read the email, I cried. And that just goes to show how important it is. I was stood there on the doorstep – I think I was putting a nappy in the bin – and it pinged up on my phone. And tears were just rolling down my cheeks. I instantly felt that relief; I get to feel normal.

We normally don’t have an afternoon or even an hour off – so to have from late afternoon to the following morning all to ourselves felt like the most amazing Christmas present.

I’ve already asked my mum to have Reuben overnight as well, so Jake and I can finally go out together. We’re supposed to be getting married, but we’ve kind of given up because we don’t have any time or energy to arrange it. We got engaged last summer and we haven’t been able to go for a meal on our own to celebrate. Now, we’re finally able to do that, thanks to Julia’s House. For the first time since Sully was born, we’ll be able to spend quality time together and just be us for a night.

We’re really so grateful to Julia’s House and the difference they’ve made to our lives. I honestly don’t know how we would have gotten through this past year without them.

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