With the help of fantastic people like Tina, I know we can get by and take on anything that comes our way.

When we should’ve been celebrating our daughter’s first birthday, we were in hospital praying she would live to see another day.

Just a couple of days after Zelcia’s birthday, she became very poorly. She had a high temperature and what I thought was a cold. Zelcia had been a very healthy baby, so as a precaution I took her to the doctors who said she would probably get better after giving her some medication. Three days later, Zelcia seemed to be getting worse. She could hardly breathe, wasn’t feeding and her stomach had become swollen. I took her to the hospital that morning and was told there was nothing to worry about, but as the day went on, Zelcia’s condition worsened. That evening we went back. I just knew something wasn’t right.

This time, the medical team did an X-Ray which showed very little. The doctor was as confused as I was – it just didn’t make sense. Zelcia was working so hard for every breath. It had to be more than a cold. They asked me whether she was having any difficulties swallowing and I told them that for the last 24 hours she hadn’t eaten anything. They decided to do another X-Ray and this time the news wasn’t good.

The team discovered Zelcia had a battery lodged in her throat. I was beside myself. I didn’t understand how it could’ve happened. At the time I was living in a B&B and I tried to keep a close eye on Zelcia as much as possible, but you can’t watch your child every single second, can you?

The doctors tried to reassure me by saying that the battery may work its way out, but they needed to assess the damage. None of us knew exactly how long the battery had been lodged in her throat for. Sadly, they discovered that it had gone too far which meant the medical team had to perform major surgery on our little baby to take out the battery, and because it had caused significant damage she needed further complicated surgery.

We were transferred to the Evelina London Children’s Hospital, but after looking at her case they couldn’t help us either as it was discovered that Zelcia had a further problem. She had a three centimetre gap between her oesophagus and trachea. We were told we had to go to Great Ormond Street Hospital (GOSH). Everything was happening so quickly – only a few days before were we celebrating Zelcia’s birthday, and now we were terrified of losing our daughter.

When we arrived at GOSH we were told that they needed to fix our daughter’s airway and to do this they needed to remove her entire oesophagus. Then once this operation was over, she would need another to fix a mesh tube called a stent.

Zelcia was in GOSH for six weeks. The first two weeks were horrendous. Zelcia’s Dad, Charles, and I aren’t together, but always put our differences aside for our daughter. So during the first two weeks the accommodation services at GOSH gave us a place to stay, but to be honest it was nothing more than a roof over our heads. Still, it was a relief to be close to our daughter.

Looking back to when Zelcia was in GOSH, I was a mess. I was just so confused as to how we’d ended up in this situation. It made me so sad to see my daughter like this and not understand why. Why did it happen? I never thought I’d be a parent with a seriously ill child in hospital.

After those first two weeks, Zelcia had had her first operation and began to get stronger. It was at this point we were introduced to Guilford Street House, where our experience changed dramatically. Guilford Street House was warm and homely, and we stayed there for four weeks. The house, run by The Sick Children’s Trust, was given to us for free which was a huge help. Tina, the House Manager, really looked after us. She made sure we were in a room with two beds, so we could both be there for Zelcia. She made us feel so comfortable and encouraged us to treat Guilford Street House like a ‘Home from Home’.

The Sick Children’s Trust was the best thing that happened to me in the most difficult time of my life and I cannot thank the charity enough.

Guilford Street House was a warm, clean place away from the hospital wards. Not only that, it gave me time and space. I was so stressed, worried and emotional but between leaving the hospital and walking over to Guilford Street House I had five minutes to myself, where I could reflect on the day and think about me and not feel guilty about it.

I could have a good sleep, a hot bath and cook a hearty meal. It’s amazing what having a space like Guilford Street House can do for your own well-being when your child is so seriously ill.

After a month, GOSH decided it was time to head back to our local hospital. It was time to start living again.

Even though we’ve left, we have never forgotten The Sick Children’s Trust and we have never forgotten Tina. Tina is such a lovely lady, every day she would help me with my laundry and she would talk to us. When you’re in hospital and surrounded by busy nursing teams and doctors it’s hard to find someone who has 20 minutes to just chat. Tina had time for us, always. I can’t stress how important she was to us. She was more than a House Manager, more than a much-needed friend; she was like a mother with an incredibly good heart.

Zelcia has a long way to go. Before turning two years old, my daughter had undergone three major surgeries plus three other operations to help her to breathe. She is an inspiration.

I’m so proud of our daughter. She’s always happy and smiling, despite everything she has to go through. It’s as if she understands that this is the way at the moment, and something she has to deal with. And to be honest, if she can cope living with all her complications, I can too.

And together, with the help of fantastic people like Tina, I know we can get by and take on anything that comes our way.

Priscilla Henebeng,

Zelcia’s Mum