Little Thea’s life was transformed when she met Rainbows Nurse, Katie, in hospital for the first time. We believe every child with a serious or terminal medical illness should have the chance to live life to the fullest – but we need your help.

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Thea’s story:

We found out at our 20-week scan that Thea had a serious heart defect. She was scanned every two weeks after that for the rest of my pregnancy – and each one showed that her heart was working, but that she would need immediate care after birth.

Thea arrived on Easter Sunday in 2019, at our local hospital in Kettering. The doctors immediately rushed her away to an incubator; they told us they needed to transfer her to the specialist Paediatric Intensive Care Unit at Leicester Royal Infirmary as soon as possible.

But then the pandemic arrived – and Leicester stopped all surgeries. We were advised that, in an emergency, Thea would have to go to Birmingham. Thankfully, she remained stable, we were checking her weight and oxygen saturation levels at home daily, sending the results through to her Cardiologist to review every week.

She finally had the surgery in the September; and at first the doctors were happy with the result. But then tests of her lungs found that they were too ‘floppy’ and she needed to go back onto the Unit. They said she might need to stay there for months, even a year.

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As we were in the middle of Covid, I was the only person allowed to stay with her and we had no visitors. It was a really lonely time – so frustrating for Thea, who just wanted to do all the things any other little girl wants to do. The hospital staff were completely lovely and so supportive – but they were so busy they just didn’t have the time to do anything other than the ‘medical’ things that Thea needed.

Eventually, we managed to get Thea back home in November.

She was still very weak and was fed through a tube. After a few months her tube was taken out and we started to feed her ourselves, but then her weight plummeted and once more we were back in hospital. We met with our Cardiologist who examined her heart and told us, “Thea has multiple holes in her heart and she’s going into heart failure.”

Thea was stuck in hospital, upset and frustrated, and we didn’t know what to do.

Then we met Katie. Katie was the Rainbows Nurse who had recently been placed within Leicester Royal Infirmary and she came to say hello. Katie helped me with Thea’s care, was there to support me through some really difficult moments – like when Thea had her pacemaker fitted – and was just on top of everything. Plus, she had the time to sit with me and listen. After two horrible, frightening, exhausting years it was incredible to meet someone who understood Thea’s care needs – but also had the time to sit patiently with me and talk about Thea, aged three and a half years how we could plan for our lives ahead.

Katie was a constant support for us in hospital while Thea gained her strength back. She made time to play with Thea and brought in a colleague who does music therapy, which Thea absolutely loved. Katie was able to support Thea as a little girl, not just a patient and really got to know her.

She also suggested that Thea might like to come into Rainbows for a visit so that she could have a little break from hospital. Now, I have to be honest and say I shuddered when I heard the words ‘children’s hospice’. It didn’t seem to me like a place that would be right for Thea. But we knew and trusted Katie, so we went to the Hospice for our first look.

And, oh my word; what a wonderful, fabulous place we found. We went for the day and we had the most brilliant time. Thea played with all the toys and we enjoyed some lovely meals together. The thing I remember most vividly, though, was the laughter – and it had been so, so long since we’d laughed together as a family.

That was in January last year and now Rainbows is absolutely a part of our lives. We go in together for short breaks and Lynda (their Play Specialist) comes out to see Thea regularly too. Last December, Thea used the Rainbow’s Hydrotherapy Pool for the first time and absolutely loved it. Now, it’s all she wants to do when she goes back!

Rainbows are our lifeline and our friends. Thea is currently stable but requires constant care – and she’ll need further surgeries in the future. But I can go to Rainbows and know that the staff there will care for her as well as I can – and that she’ll have a wonderful time too. It also means that I get a few hours’ break from her care needs. She is my little girl and I would do anything for her, but her constant care needs do take their toll, physically and emotionally.

Rainbows’ care has transformed Thea’s life, and it all started when Katie came to see us in hospital that first time. I know the difference Rainbows can make to families like ours – and so I want to add my support to this appeal so that more local families can find their ‘Katie’. No-one is ever fully prepared to have a child with a serious or terminal condition like Thea. But, I can tell you from personal experience, if it does happen – you will want a Rainbows Nurse to be there with you.

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