Hugh’s story

A protective little bubble

When Hugh was born, apart from a bout of pneumonia he was discharged as a completely healthy baby. Quite quickly however, I started to notice that something wasn’t right. He wasn’t like his older brother.

After many tests, they found that Hugh had a rare genetic disorder. The doctor drew it on paper and explained that his chromosomes were all there, but in the wrong order. The disorder was so rare that there was no name for it. All we had was this squiggle of lines on paper.

At nine months old, he started having seizures which was incredibly frightening. Hugh lay in between me and my husband Stephen at night, so we could keep an eye on him. We knew that if he moved in a certain way, he had stopped breathing. If he did, we’d jump up, turn on the lights and start mouth to mouth.

Hugh was having up to 40 seizures a month. We weren’t able to sleep, and the next morning we just had to carry on.

Stephen would go to work, and I’d have Hugh and his two year old brother to look after. The support wasn’t there for us, so it was really hard.

Eventually, the seizures got so bad that the doctors had to heavily sedate him. When he came around after two weeks, he couldn’t open his eyes, he couldn’t lift his head, and he’d lost the ability to swallow. He had to have a feeding tube from then, so we were able to get help from community nurses.

Child with multisensory equipment at Acorns

One of the nurses mentioned Acorns but I didn’t want to think a hospice was a place for my baby. I buried my head in the sand but every time the nurse visited, he’d mention Acorns.

What made me change my mind in the end was Hugh’s brother, Sean. He was missing out on a childhood because I was constantly worried about keeping his brother alive. He needed his mum as well.

Acorns didn’t feel like a hospital, it felt more like a home. We took it slowly as I was too scared to leave him with anybody else. At first, I stayed with him, but the staff never made me feel silly for that. After some time, I was happy to leave Hugh overnight.

When he was staying over, we could prioritise Sean. We could do things he wanted to do that Hugh wasn’t able to. We could go bowling and he could have both his mum and dad together at the same time for once which was lovely.

Child and brother in the hydrotherapy pool at Acorns

We could have family time too. The four of us could use the pool at Acorns which we could never do all together. We can’t take Hugh to a regular swimming pool, but at Acorns there are nurses there if anything happens. Sean loves the pool and even learned to swim during visits.

We’ve been coming to Acorns for nine years now. Hugh’s condition wasn’t diagnosed until he was eight, so we didn’t know what his future looked like. We had so many unanswered questions. Coming to Acorns meant I could meet other parents in the same situation. They had the same kind of worries and understood what I was going through.

Acorns has given us somebody to talk to, somebody that I can share my worst fears with, and they have given us an opportunity to spend time together as a family.

They really helped to take the pressure off in those early days too. It helped us cope with the scary reality of what we were living with.

Acorns protects us, like a little bubble. They hold us together.

Hugh’s mum