"Albert, my beautiful eight-year-old boy, suffers from Batten’s Disease; a terminal, degenerative neurological condition which causes seizures, blindness, and over time takes away a child’s ability to move or speak independently. Tragically, the average life expectancy is nine to 11 years." 

Albert's mum, Holli, shares their story:

"In our little family unit there’s me (Holli), my husband Jake, Albert of course, and Albert’s little brother Wilfred who’s five now.

"When Albert was little, he was able to move around on his own and he could speak a bit, but as his condition has progressed he’s lost those abilities and he doesn’t really have any mobility or speech now. He requires constant supervision, as he suffers from regular epileptic seizures and has trouble swallowing by himself sometimes. It’s a 24-hour job keeping an eye on him; I’ve even got it set up where if I’m lying in bed at night, I can see all his monitoring machines through the open door!

"Up until recently, Albert was still attending school for one day a week, but often it would leave him feeling more unwell, sometimes for weeks at a time. His needs are just too complicated to be managed in a school setting, so we’ve made the difficult decision to pull him out and begin homeschooling instead. We were also lucky enough if you can call it that, to move into a much more accessible property as Albert’s condition has progressed; now there aren’t stairs to tackle, which makes things much easier for the care teams that come in to help look after him. Our whole lives have had to be rearranged around Albert, but as his parents there obviously wasn’t any question about it; we just did it."

A collage of photos of Albert and his little brother, Wilfred.

Albert's brother, Wilfred.

Holli continues: "For Wilfred, it isn’t so strange because it’s all he knows. He loves his big brother; they have movie nights in their bedroom on Friday and they’ll cuddle up together, and he knows some of the basics of what to do if Albert has a seizure. He can even tell me the readings on Albert’s machines if I ask him to. Otherwise, he’s like any other little boy. He just gets on with things, he’s amazing. I do worry sometimes that more of the focus is on Albert because it has to be, but Wilfred has never complained more than any other five-year-old would."

Getting in touch with Demelza's East Sussex Care at Home team.

"We got in touch with Demelza right before the pandemic struck, so the timing could definitely have been better, but the East Sussex Care at Home team have been amazing regardless of circumstances. We have a Demelza Registered Nurse (Jenna) and a Healthcare Assistant (Elle) come out to the house and take care of Albert for a few hours. They do all the practical stuff like administering his medications, feeding him, and changing him – they’re able to work in tandem with other carers we have in as well.

"It gives us a break from the constant monitoring and worry, and knowing we can trust the Demelza team to look after our little boy is such a relief; Jake and I were even able to go for dinner together the other night, safe in the knowledge Albert was being properly cared for at home by a Demelza nurse. It also means I can do the school run with Wilfred, without factoring in the extra time and stress of getting Albert dressed and in the car. I don’t think most people understand how difficult it is to do really normal stuff when you have a seriously ill child. Without support, even basic things like going out to the shop or cooking dinner become a whole operation – so Demelza’s help with things like that makes all the difference.

"It’s not just the practical side of things either; we’ve gotten to know the team so well over the past few years and we really feel like we’ve built a trusting relationship now. If there’s something I’m finding difficult, just knowing I can vent about it to one of the Care at Home nurses is a massive relief – sometimes you just need to talk to someone who understands how difficult it all is. Sometimes you just want to have a moan about things, and you’re able to do that without any judgement. It really is like having a friend around.

"They’re great at offering solutions as well, and you’re never expected to go it alone. Liz (a member of Demelza’s Family Support team) is always on hand to help us apply for grant funding when we need expensive new equipment to cope with Albert’s ever-changing needs. The team also supported us in acquiring funding for a wheelchair accessible vehicle, which will make such a difference in being able to take Albert out and about – without the added worry of getting him settled in a car that isn’t appropriate for his condition. While we wait for the van to be delivered, the team have even been ferrying Albert to appointments in their own specially kitted out vehicle. They’ve helped us with a lot of things like that; I don’t think I would have had any idea where to start if it wasn’t for Demelza’s support.

"We don’t know exactly what the next couple of years holds for Albert. Right now, we’re managing the symptoms of his condition and he’s as happy as he can be – but he will continue to deteriorate, and we’ll eventually lose him. You can’t prepare for something like that. We’re just trying to make the best of the time we have; giving our boys the time and attention they both need, and making happy memories together as a family. Things won’t get any easier, and I know we’ll need Demelza’s services the whole way through our journey; we’re so grateful we can lean on them, and that they’ll be there for as long as we need."

 

 

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