Wilf's Story by Mum, Abbie

Rupert is very protective over Wilf and doesn’t let anyone go near him. When Wilf coughs, he knows to get the suction machine. He’ll tap his chest. He copies everything that his dad and I do. He’s only four but he’s so grown up when it comes to looking after his brother.

They’re twins but they’re nothing alike. Rupert loves a cuddle, but Wilf doesn’t like much touch at all. His hands are very sensitive. He’s also deaf and partially sighted, so he finds it quite scary if you touch him without warning.

But he’s quite happy considering everything he faces – he’s a very happy little boy.

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Wilf definitely saves the best smiles for his dad; his very first smile was for him. When we had Wilf’s hearing aid fitted and he heard Liam speak, he instantly started beaming. It’s always been that way since. He can hear lower tones better and he loves the sound of Liam’s voice – he'll look up at him and listen and smile.

We haven’t had a diagnosis for Wilf, and I don’t hold out much hope that we will in his lifetime. He has lots of little problems. On paper, he probably doesn’t seem that bad but when you meet him, you quickly realise how complex his medical needs are.

When he was first born, they did lots of genetic testing and it all came back as normal. They said one day we’ll discover a mutation and your experience will help other people with the same diagnosis, but not your family. They basically just say it’s epilepsy.

Without a diagnosis, it’s difficult to describe what Wilf has, and we don’t know what’s in store for him. We don’t know what his life will entail, we just have to take every day and problem as it comes.

Wilf was born profoundly deaf but otherwise seemed okay. Then, at five months old he massively regressed. He stopped rolling over, he stopped interacting and he started having seizures. They were completely uncontrolled for two years.

We trialled several anti-epileptic drugs. Nothing worked. Then, at about a year old, Wilf caught COVID and he got so poorly, he lost the ability to eat. He went from three meals a day to literally nothing – he would even gag on a dummy.

We had to have a nasogastric feeding tube and he would just throw up everything he ate. We couldn’t even give him his epilepsy drugs, which was really dangerous at the time because he was having 30 seizures a day. We had to pin him down and hold his mouth open to get him to take the drugs – it was so awful.

After Wilf turned two years old, he moved onto a PEG so he could feed through his tummy instead.

Wilf does still have seizures now but not as many. He has laughing seizures which makes him look like he’s having fits of hysterics. If you didn’t know, you would think he’s just found something absolutely hilarious, but that’s a laughing seizure. It can go on for anywhere between 5 and 10 minutes.

It happened in his sleep and I thought, ‘What on earth is he laughing about?’

I took a video, and the doctor said, ‘Yes that’s a seizure.’ People will comment on how lovely it is, and I don’t have the heart to tell them he’s having a seizure; I’m just there, silently willing him to come out of it.

He’ll have head-drop seizures too where he rolls his eyes and he loses the muscle tone in his body and he just drops his head and I have to bring his head back up again.

I have rescue medication prescribed for his seizures, but they only want me to give him medication if he has a really big clonic tonic seizure for more than five minutes, or clusters of seizures – like his laughing seizures - for half an hour or more.

He was having rescue meds twice a day for about two years and it really played havoc with his chest. He had chest infection after chest infection, and he’s been left with a chronic cough. He just coughs most of the time, which often causes a vomit and that triggers everything else because then he needs to be aspirated. It’s ongoing.

I love the midweek sessions at the hospice because it means that I literally get a day in the week to do my food shop, or clean my house. I catch-up on stuff so we can spend time on the weekend as a family.

Sometimes it means that I can spend the day with Rupert because we don't get much time to do normal family things.

Having one child with additional needs and one child with no medical needs makes it really hard to go out together. We can’t have a normal family day out or do something like swimming together. I can’t even do something as simple as a food shop with both of them – it's horrendous.

On the weekends we love to do things as a family, with our older children Eddie and Daisy too, but during the week I don’t get to have those adult conversations or to do adult things. I’m Wilf’s full-time carer and I don’t have time to sit down; I don’t have time to do anything.

I never have enough time to give just all my attention to Wilf because I’ve got Rupert at home as well, but his needs are so high – I can’t leave him, I’m always watching him. When he’s at the Julia’s House sessions that means someone else can do that, and I don’t have to. And I know with Julia’s House, I can absolutely trust them to take the best care of Wilf the whole time.

I absolutely love looking after my kids, but you do need some time away to just be yourself again. Julia’s House gives me that gift of time, and I really look forward to it.

We all really love the family events that Julia’s House organises as well – it's so helpful to meet other parents and families who understand what life is like for us. The Sibling service is amazing for all the kids too. Recently, Rupert had the best time at a special creepy crawlie day at the hospice. He stroked spiders and lizards and held snakes, and they even had bug-themed ice cream. He can be a bit shy around other children sometimes, but he just loved that!

Rupert especially really enjoys having his one-to-one sessions with his Sibling Worker, Tracey. She’ll come to our house, and they have loads of fun together. At the moment, all he wants her to do is make Play Doh sabre-toothed tigers with him!

Julia’s House helps our whole family, not just Wilf, and we’re really grateful to have their support.

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