Albert's story

Since we first met Albert, he has been blossoming at a new school.

Holli says: “Albert is loving school. We started home-schooling him after he got really poorly, but after a while we realised he didn’t want to be at home, listening to us all the time! He started off doing a couple of mornings and now he does four full days, which is really good.

“When your child is home-educated, especially when they have complex needs, you are restricted in certain things. Maybe most people could join a group for people home-educating their children, but when your child is in a wheelchair you’re more restricted as to where you go and what you do. So now Albert is at school it means he gets some normality, and he's around people that understand his needs.

“Albert definitely responds more now and has more of a social crowd – quite of a lot of the kids at his school are supported by Demelza as well, so there’s a bit of a group. It’s nice to catch up with them at parties - there’s a real community of people who get it.”

It’s not just Albert who’s been making new friends - his little brother Wilfred has been getting involved too.

Holli says: “Wilfred really likes the parties – sometimes he’s too cool for things but even he’ll end up at the front dancing at the disco! He definitely feels more comfortable now and he’s met a few siblings at Demelza events. He’s quite social but he’s only just hit the right age to go on sibling days, so we want to do more.”

For many children, having a sibling with complex needs means life looks a little different, so being with other children who know what it’s like can be really helpful.

Holli explains: “Wilf doesn’t really hang out with friends from school – he doesn’t get on with them very well, because he’s older than his years. When they do normal things that seven- or eight-year-olds do, he just doesn’t get it - he can get frustrated playing with them. He just plays better with older children, so for him, the sibling events are good because they’re all the same.

“He's really good – he doesn’t understand everything about Albert, but from a really young age he knew about his meds. Now Wilfred could suction him if he needed to, like if there was an emergency in the back of the car, or I can ask him to pass me a certain medicine and he knows what it is.”

Last year, the family welcomed a new baby, Percy, and Demelza were able to be on call to support the family with Albert’s care while his youngest brother was born.

Holli says: “Our Demelza nurse comes in a few hours each week to provide care, but they’re also on hand in case we need any extra support. Like when Percy, our youngest, was born. Initially I wasn’t too worried, but nearer the end of the pregnancy I started to panic, thinking things like ‘What if I go into labour en route to pick up Albert from school, what if I’m stuck on my own, what if, what if, what if!’

“My mum was set to look after all the kids during the birth but she gets a bit worried about it - she doesn’t want to do meds or anything like that. So Demelza arranged it so if we got stuck, we could call – whatever happened we would be covered. A couple of weeks before, our Demelza nurse also sat down with mum to go through everything so that she was a bit more confident. It just made it so much easier knowing someone was on the end of the phone that could cover Albert’s needs. It definitely took a pressure off knowing that I didn’t have to worry too much.”

As well as being there for the big moments, Demelza continues to support Albert’s family with the ups and downs of daily life.

Holli says: “Albert has a really good team, everyone cares a lot about him. Albert is completely unpredictable – he writes his own story. He’ll be alright, and then suddenly something will crop up – you just have to take every day as it is. With kids like Albert, they can go from fine to really sick, really quickly, so we just do what we have to do. But we’ve got great people around us. They know Albert so well, and us as family, so they can just give us that reassurance.

“It’s great having the Demelza team on call in case anything comes up, knowing that they will jump into action when we needed that help. If we didn’t have that, it would be really hard.

“Life can be so hectic but the Demelza nurses just join in the craziness! It’s great because I know that if it’s been a long night or I just need a break, the Demelza nurses are here. I can just go have a bath and they will take care of things. It’s so nice to have that, because although they’re here to support Albert’s needs, actually they really do become part of the family.”