“She was such a tiny little girl when she was born – just 3lb 10oz, even though she was a full-term baby. One day, when I was bathing her and because of the way the light was shining on her eyes, one of her pupils looked see-through instead of black. It was really odd,” Tehya’s mum Tammy, recalls. That was the start of a traumatic and life-changing journey for Tammy, Tehya and her family.
Ten-year-old Tehya has a rare genetic condition that affects her growth, her breathing and muscles. It is thought this may have also been the trigger for the retinal cancer she developed as a baby. Tammy continues: “Tehya had to have her eye removed and a prosthetic 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.
“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. The other night we were up eating spaghetti bolognese at 5am! I do have a routine, so that she knows when it’s time to sleep, but even then the days and nights get very mixed up. It can be really difficult, as I have to be able to look after Tehya’s sister, Talee too – spend time with her, help her with homework, get her to school. It can get really exhausting.”
The girls have blossomed
“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. I just wanted to do everything myself. One of the nurses came to talk to me and it was just so helpful. They really understood. And I thought ‘this is the place for Tehya.’ They’ve been in our lives since 2014 and it’s just like they’re our extended family. I know Tehya is with someone familiar, I know she is safe. 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 though. Initially, after all her medical procedures, Tehya was very wary and associated touch with horrible medical procedures, but now she loves her cuddles and hugs with the care team. When she hears the voices of the nurses and carers, she gets so excited. She’s such a smiley, happy girl. For Talee too, it took a while to build her confidence. Maria, her sibling worker, has helped so much and encouraged Talee to bring along a friend to sibling outings until she got to know a few people. Now she loves it. When they all went to see The Vamps, she was buzzing for days. I can’t imagine what our lives would be like without them. The girls have just blossomed with the support of Julia’s House.“
It’s just like they’re our extended familyTammy
We lost everything overnight
“Lockdown has been very hard for us all. I question myself whether I could make it through another 12 months, if I had to face it all again. If I knew what lay ahead of us, I feel like I would have breathed in and just not breathed out. We moved house just at the start of lockdown too. It felt like we lost everything overnight – our home, our family and our support network. But I couldn’t stop, I had to keep going for the girls, so I think I just put my head down and got on with everything.
“We felt so isolated and alone. Julia’s House was a lifeline. We weren’t seeing anyone initially as I was so scared, but the nurses and carers called me all the time and would pick up medicine and other essential for us. But the longer we were in lockdown, I realised that I just couldn’t put all our lives on hold. Tehya needs 24/7 care as she can’t see, so I have to narrate to her all the time so she knows what’s happening, what the plan is for the day. It was constant. She was also missing out on the development and interaction she gains from her time with the nurses and carers. We were really lucky our night carer bubbled with us, but often it was just the girls and I for five days with no break, no-one coming into the house for me or the children to interact with. It was a huge void for all of us.
“So I bit the bullet and let people back into the house. Julia’s House PPE has been so fantastic, they go above and beyond, so I felt reassured to start having visits at home. I still don’t have close contact, so the carers collect Tehya in her wheelchair and they go 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 sounds and smells of the outside world again.
“Tehya has loved the virtual activities too, they have been a real constant for us, something scheduled to look forward to,” continued Tammy. “And 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. And the playworkers 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.”
“Tehya loves the virtual music and storytimes. She listens so well and is learning to take turns, which considering her sight loss is amazing and no easy task over zoom!” said Lisa. “So, although she enjoys the sessions immensely, they are also doing wonders for her development while she’s not attending school. “
Missing home from home
“It’s been very hard not be able to go to the hospice during the pandemic. 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. I’ve missed the social events too, just seeing people at the hospice to chat to, who understand what your life is like, being able to smile and laugh. I’m really looking forward to when we can all get together at one of the big family BBQs and when Tehya can be with her friends at the hospice again.
“Talee has missed the sibling outings too, but being able to see Maria has given her little snippets of time just for her, someone to talk to and share things. 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. That’s really helped take her mind off things. 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.
“Being the girls’ mum is the best job in the world, and what might seem a little thing in other people’s lives, is actually a massive achievement for us. 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.“
It’s a special place. So far from what I thought a hospice would be.Tammy
Keeping the wheels on the car
“Being the girls’ mum is the best job in the world, and what might seem a little thing in other people’s lives, is actually a massive achievement for us. 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.”
There are no limits to what Julia’s House Children’s Hospice will do for families like Tehya’s.
But right now, hospices like Julia’s House are being pushed to their limits. More and more families need their help – and that’s why we need you to push yourself to your limits by fundraising or making a donation directly today.