Gemma’s story: Siblings need support too

Gemma is mum to Olivia, Teddie and Jesse. This is their story…

A search for help

When Olivia was born, everything appeared fine. Baby Olivia was discharged from hospital at two days old and welcomed home. “But from then on, all she did was scream and cry. She cried for 23 out of 24 hours a day” says mum Gemma.

Gemma knew something wasn’t right, but as a first-time mum she was turned away by every doctor and nurse she spoke to. “Nobody would listen to me. Everyone kept telling me ‘she’s your first baby, she’ll be alright.’”

Finally, when Olivia was eleven months old and Gemma felt like she had reached breaking point, Olivia was referred to a paediatrician and diagnosed with FOXG1 syndrome, a rare neurological and developmental disorder. “We were told that the longest living child with FOXG1 syndrome that the hospital had treated was seven years old. Our world was crushed.”

But Olivia is a fighter: she is now 14 and living life to its fullest. “She’s always happy and she has the most infectious smile. Even when she’s in the worst pain she could be in, she’s always smiling. It’s beautiful.”

Olivia has recently also been diagnosed with gut failure and severe scoliosis. She is currently bed-bound and needs constant care. Although the family don’t know how long they will have together, Gemma has had to stay strong for both Olivia and her two sons, Teddie and Jesse.

Both younger than Olivia, neither nine-year-old Teddie or seven-year-old Jesse have known a life without their older sister. “It’s hard for Teddie and Jesse but they handle it really well. They really love Olivia and they’re so good with her. They want to sit and watch films with her and hold her hand. They’re just not so good with each other!”

“Teddie has started to recognise that if an ambulance comes, mummy will go away and might not come back for a while. The anxiety starts to set in and the first question he asks is ‘how long will you be gone for?’ and I can never give him that answer.”

Jesse is more accepting of Olivia’s medical needs than Teddie, but he still has his own worries. “Jesse has a lot of fears around death and people dying. We don’t know if Olivia sets off those anxieties for him. One day she will be alright and the next, she could be really poorly. There’s never any warning so it can come as quite a shock for the boys.”

Getting support

Olivia has recently started receiving respite stays at the family’s local children’s hospice. These breaks are much needed by the whole family. During these stays, Olivia is able to access specialist equipment and take part in activities she isn’t normally able to, like swimming in the hydrotherapy pool, whilst Gemma is able to take Teddie and Jesse on daytrips that Olivia can’t join them on.

“They can go to Blackpool for the day and play on the beach, or we can go on a camping trip for a couple of nights. It’s things like that they have missed out on for so many years, and I didn’t realise until we started getting these opportunities. They need this time as much as Olivia does.”

Through Olivia’s palliative care team, Gemma was also introduced to Lisa, a Community Outreach Worker at Together for Short Lives. With Lisa’s help, Gemma and her family have been able to access even more support.

One way Lisa has helped the family is through hosting a series of events aimed at families caring for a seriously ill child. Although the events have been inclusive for the whole family, Gemma thinks Teddie and Jesse have benefited even more than Olivia from these events.

In October 2023, the whole family were able to attend a Halloween party hosted by Lisa at a local children’s hospice. But this wasn’t just any Halloween party – there was a special guest appearance from Together for Short Lives’ Patron, Mason Mount.

For football-fan, Teddie, being able to attend an event like this is more than the opportunity to meet other siblings in the same situation: it is a chance to create memories to treasure forever, where he can forget about his worries for an hour. “We wanted it to be a surprise so we didn’t tell Teddie that Mason was going to be there. And when he saw Mason, he was absolutely amazed! He thought Mason was there just for him and he kept saying ‘this is the best day of my life, I’m never going to forget it’. What that day did for Teddie, I can’t even explain.”

Over the past year, the family have attended several events, including a Treetop Nets event specifically aimed at siblings of seriously ill children. “It was pouring down with rain that day but I’ve never seen them so happy. They were all up in the trees, climbing around. They loved it. They still ask me if they can go back there!”

Quality time together

For families caring for a seriously ill child, it can sometimes be hard to create special moments with siblings where the siblings get the support they need. But with the support of Lisa and their local children’s hospice, Gemma is able to spend quality time with Teddie and Jesse, as well as with Olivia.

“Teddie and Jesse don’t always get to have this kind of fun. Their lives are kind of put on hold for Olivia. Attending these events is not something we would normally have planned as a family but it’s opened our eyes to how we do really need to give these boys more fun time.”

“Lisa has changed our family. Being able to go out, and having the courage to go out, with all of the children together… it’s amazing. She has made such a difference to us all.

Thanks to our partnership with Morrisons, our Community Outreach Project was launched in Spring 2023. This pivotal move aims to reach more families with a seriously ill child, ensuring they receive the vital support they need and are connected to their local children’s hospice.