Tammy, Tehya and Talee's story

Ten-year-old Tehya has a rare genetic condition which affects her growth, her breathing and her muscles. It is thought this may have also been the trigger for the retinal cancer she developed as a baby.

Tehya’s mum Tammy recalls: “Tehya had to have an eye removed and a glass eye fitted. I felt completely traumatised and numb but was just so glad she was alive. I still had Tehya and that was all that mattered. Then they found a tumour in her other eye – she had laser therapy and chemotherapy. Because it was discovered early, they managed to save the eye but unfortunately they couldn’t save her sight.

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“As she is totally blind, Tehya can’t tell day from night, so she can be awake all hours of the night or sleep in during the day. It can be really difficult, as I have to be able to look after Tehya’s sister, Talee too. It can get really exhausting.

“When Julia’s House was mentioned, at first I didn’t want any help as I felt no-one could look after Tehya like I could. One of the nurses came to talk to me and it was so helpful. They really understood. And I thought ‘this is the place for Tehya.’ They’ve been in our lives ever since and it’s just like they’re our extended family. Talee gets support too from their siblings service and that has made the world of difference to her confidence and resilience.

"It has been a challenging journey but the girls have blossomed with the support of Julia’s House. I can’t imagine what our lives would be like without them.

“Lockdown has been very hard for us all. If I knew what lay ahead of us, I feel like I would have breathed in and just not breathed out. We moved house at the start of lockdown, too.

"It felt like we lost everything overnight – our home, our family and our support network. We felt so isolated and alone, but Julia’s House was a lifeline. The nurses and carers called me all the time and would pick up medicine and other essentials for us, or collect Tehya in her wheelchair and take her out for a long walk.”

Tehya’s nurse, Lisa, added: “It’s lovely for Tehya to be outside and it means we can give Tammy a break from caring responsibilities for a couple of hours. Also, Tehya can enjoy being outside and really benefits from being in the fresh air and the sights, sounds and smells of the outside world again.”

“Tehya has loved the virtual activities too, they have given us something scheduled to look forward to,” continues Tammy. “The carers drop in play resources to us, so we can join in with whatever is happening on the screen. They have been a lifesaver, really fantastic. It gives Tehya someone different to interact with and I get some time to spend with Talee. The play workers have also been brilliant in coming up with strategies to try and help some of Tehya’s behavioural problems that had begun to get a bit out of hand.”

“Teyha loves the virtual music and story times. She listens so well and is learning to take turns, which considering her sight loss is amazing and no easy task over Zoom!” says Lisa.

“It’s been very hard not being able to go to the hospice during the pandemic,” Tammy admits. “It’s like a home from home for Tehya and her face lights up when she knows she’s going. Everyone is so warm and welcoming. It’s a special place. So far from what I thought a hospice would be. You get such a positive feeling when you go there.

“Talee has missed the sibling outings too, but being able to see Maria, our sibling support worker, has given her little snippets of time just for her, someone to talk to and share things with. That’s been so important for her as she has been bullied at school over the last couple of years and has found that really hard. Maria keeps her absorbed and busy with amazing art projects and nature walks. Sometimes the girls are out at the same time and I can take a complete break – you can lose yourself in your role as carer, so the support from Julia’s House has enabled me to get a sense of self back.

“Julia’s House has helped keep us on track – they’ve kept the wheels on the car so we can keep moving. I couldn’t imagine our lives without them. It’s just a total support network.”

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