Family stories

Sarah’s story

The youngest of three, 34-year-old Sarah lives at home with her mum and dad. She’s got a smile that’s contagious and loves to dance. Recently though, Sarah’s heart and lung condition has deteriorated and her parents don’t know how long they have left with their fun loving daughter. Mum, Siobhan, shares their story.

“We’re best friends”

Sarah and I are joined at the hip. It’s always been like that. She makes me laugh all the time, and everyone she meets loves her because she’s so bubbly and chatty. Just being around Sarah makes you feel better.

Sarah was born with a hole in her heart which no one picked up until she was two years old. By then, it was too dangerous to operate, so she’s had to live with the condition all her life. It’s caused her to have pulmonary hypertension, which means there is excessive pressure in her lungs which has damaged them – making it hard to breathe. We were told that she’d only live to be a teenager. She’s now 34.

Sarah and her mum in the courtyard at the Hospice

“It’s only recently that she’s become more unwell”

Sarah’s main passion is dancing. She loves getting dressed up and every week we’d go to dance groups together. But in November 2021 she collapsed on the dance floor at a party. We went straight to the hospital and that’s when we were told Sarah’s condition was deteriorating and it would be a good idea to get St Barnabas House involved.

I’ve always known Sarah’s life would be limited, but when I heard the word ‘hospice’ I was devastated. Immediately I thought of death, and it broke me. But St Barnabas isn’t the scary place I imagined. It’s full of life and Sarah loves visiting. Sometimes, she’ll ask, “Mummy, what’s a hospice?” and I’ve just explained it’s a very special place where she can have fun and people will look after her. She knows she has heart and lung problems, but she doesn’t know how poorly she is.

Sarah's artwork in action

“Art is now a big part of Sarah’s world”

After Sarah collapsed, she had to stop dancing. She can’t walk very far now – she just hasn’t got the energy. But thanks to St Barnabas, Sarah has a new focus, and that’s art. Instead of dancing, every week she goes to the hospice for art sessions with a group of people who are also being cared for by the hospice.

It’s run by Stevan, the artist-in-residence who has helped Sarah create all sorts of things. She’s made a jewellery box, a painting of Torvill and Dean doing the Bolero, a Rolling Stones album cover and a colourful Beatles painting. At the moment she’s having fun with spin art – using paints and a spinning wheel to create bold abstract paintings. They look so good that Shoreham Harbour Club has commissioned Sarah to create two new paintings for their walls! Since becoming more unwell Sarah isn’t as confident, so this has been a big boost for her.

Sarah's artwork

“The support doesn’t stop there”

As well as the art, Sarah loves food! So, when we were told about the Bake and Taste cooking group which is part of the hospice’s Living Well service, she jumped at the chance. The course ran for six weeks and Sarah came home with lots of delicious treats – scones, cheese straws and Bakewell tarts. It is about more than the food though. Sarah loves being around people and activities like this mean she has a chance to chat and have fun.

Sarah has also had a Community Companion. A lovely hospice volunteer called Pip who’d visit once a week for a few hours. Since going downhill Sarah spends a lot of time in her bedroom, but she loved going with out with Pip. It always involved food of course! Tea and cake, brunch, pub lunches and pottery painting. And as her main carer, it was a bit of time for me to rest and relax.

Sarah and her mum in the art room at the Hospice

“Sarah is my world and I can’t imagine life without her”

St Barnabas is now a place where Sarah feels comfortable. Lots of people know her and if she does need to stay at the hospice for a while she won’t be scared. I can’t tell you how important that is to us a family.

No one knows how much life Sarah’s got left. It’ll be her 35th birthday in September, but we don’t work that far in advance anymore. We take it a day at time, and seeing her happy is the most important thing.