Reggie’s story

Est. read time: 5-6 minutes.

A bereaved family have spoken of the “care, support, compassion and professionalism” they received at a children’s hospice. Reggie Oswald was just nine months old when he died on 9th August, 2022.

He had SPTAN1 gene deletion that caused epileptic encephalopathy – a devastating group of epilepsies that left him experiencing seizures and spasms every day, as well as developmental delay – and both he and his family became regular visitors to the East Anglia’s Children’s Hospice (EACH) base in Milton.

“EACH was a lifeline to us during a very difficult time,” said mum Emma Wood, who lives with partner Dan Oswald and seven-year-old son Ralph.

“In December, we’d been told there wasn’t a chance Reggie would get past Christmas. It was such a devastating prognosis and we were terrified when we first heard the word ‘hospice’.

“It brought it home to us that we were on a particular pathway and we knew where it was going to end. However, I can’t speak highly enough or more passionately about Milton.

“We got to know the staff very well and they were so incredibly supportive. What we were going through was unimaginable – every parent’s worst nightmare – and we wouldn’t have been able to do it without them.

“EACH made a very difficult, almost impossible, situation so much easier and I don’t know what we’d have done without their input. Thanks to them, we were able to make the very most of the time we had.”

The family, who live in Bury, near Huntingdon, enjoyed lots of memory-making with Reggie, who would have celebrated his first birthday on 19th October.

They stayed overnight at the hospice during Ralph’s May half-term holiday and then, on 4th August, four days before Reggie died, they were thrilled to use the hydro pool at Milton.

A beautiful photo of the four of them graced the back page of Reggie’s Order of Service booklet. “We did so much together, as a family, including having a swim,” said Emma.

“That was one of our ‘bucket list’ things and we were fortunate enough to be able to use the hydro pool. In fact, we were the first family to re-use the pool since the pandemic and that meant the world to us, especially Ralph. He was desperate to have a swim with his little brother.

“Something like that is a treasured memory that just wouldn’t have been possible in normal circumstances. We were thankful for every day we had together and want to help support the work of the hospice, to enable them to help other families like ours.”

Emma says she was particularly touched by the profound effect Milton had on Ralph, who took part in the EACH sibling events in April and August.

“There was so much uncertainty for such a long period of time,” she said. “I was trying to be a full-time carer but also needed to be there as Ralph’s mum.

“It was so hard for Dan, too. He had to work but also wanted to be there for us, so struggled to cope and divide his time. We tried to keep things normal but it was incredibly hard. We were at such a low and felt there was no way we could carry on.

“We couldn’t sugar-coat what was happening but it was about making the best of the time we had. We were scared but there was so much help and support, not least when we brought Reggie home at the end of January.

“We were both determined to be there for Ralph and he loves spending time at Milton. He goes back at every opportunity. He’s so at home there and to us, as parents, that means the world.

“It’s been so hard for him and the last thing we wanted was for him to feel upset or uncomfortable in the hospice. As it turns out, the complete opposite applies. He’d live there if he could and he’s always asking if we can have another ‘holiday’ at Milton.

“Like us, he feels a real connection with the place and it helps him feel close to Reggie. He was allowed to take some friends there one afternoon and they had a whale of a time playing outside. He wanted them to see it and was proud of his connection.”

As well as raising vital funds, Emma and her family are keen to make people more aware of the work that goes on at Milton. “It’s so important to raise awareness,” said Emma.

“Unless you happen to find yourself in a situation like ours, you wouldn’t have any idea of what goes on in a hospice. I understand and was exactly the same, until this year. It’s a different world but one that kept us going at the darkest time of our lives.

“It’s certainly not a place where you find doom, gloom or negativity. Reggie was able to make the most of his short life and we’ll forever be thankful for that. We’ll always have a very special and strong bond with EACH.

“The staff are amazing and we’re so thankful, on so many levels. Their support has been invaluable and they’ve become a massive part of our lives.

“Spending time at the hospice wasn’t what we planned or envisaged but it was the best experience possible, given the circumstances. Our whole family is in awe and we’re so thankful for what they’ve done for us.

“They supported us every step of the way and catered for our every need, even down to making sure we were fed and watered. I could say ‘thank you’ a million times and it wouldn’t be enough.

“They have shown such care, support, compassion and professionalism. They would say they’re just doing their jobs but they’re very good at making you feel important.

“The hospice, and everyone who works there, has a special place in our hearts. They gave us so much.”

Published in October 2022

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

Reggie was able to make the most of his short life and we’ll forever be thankful for that.

Related stories

Luke’s story

Est. read time – 6-7 minutes. Parents whose beaming baby son continues to defy the odds have described him as their “little…

Read story

Ben’s story

Est. read time – 3-4 minutes. A talented artist has reminisced about the fun and friendships he enjoyed while receiving care from…

Read story

Gintaras’ story

Est. read time – 4-5 minutes. A mum who was told her baby son would not survive has spoken of her pride,…

Read story
Shopping Cart
Scroll to Top