When tragic Azaylia died from leukaemia in April 2021, her parents Safiyya Vorajee, 34, and Ashley Cain, 31, were devastated. They have now separated but remain united by their charity work. Here, Safiyya shares her heartbreaking story…

“The necklace that I wear every day has a copy of Azaylia’s handprint on it. I also have a cast of her feet which I hold whenever I need extra comfort.

A whole year has passed since my beautiful eight-month-old daughter went up to heaven. Since then, every day, sometimes more than once, I go to her special resting place. It’s the only place where I feel real calm.

At difficult times like Christmas, Mother’s Day, and when I just don’t know how to cope, I go and decorate her “garden” there, sharing those special moments with her.

Not knowing how to mark the first anniversary of losing her made me panic. I went to her resting place in the morning,
at the time she passed, and I spent all day there, until the cemetery shut that night.

The day before, Ashley ran an ultramarathon – 100 miles from Azaylia’s resting place in Nuneaton, Warwickshire, to Trafalgar Square in London – raising money for the charity foundation we set up in her name. I proudly cycled 55 miles of it myself.

I swear the only reason Ashley and I are still walking this Earth is having that charity to pour our hearts and souls into.

I couldn’t face the crowds at Trafalgar Square to meet him afterwards, I needed to mark the day quietly.

I wanted to create a “bed of heaven” with beautiful white roses and a little bell. We also released three doves into the sky – one for Azaylia, one for Ashley and one for me, to symbolise how us three will always be united. Me and Ashley separated several months ago, but only announced it in March. Nothing could be as bad as losing our daughter was, so although we are no longer a couple, we will always have an unbreakable bond.

We have a passion and a purpose with the foundation to continue keeping our word and do our daughter proud.

Ashley’s strength throughout this year has been phenomenal. I took a back seat for a long time, becoming such an introvert.

I found it difficult to talk about my feelings, it came out jumbled. But Ashley was very good at speaking.

Writing my book [which was published on 28 April] helped me to articulately express everything inside me. But, my God, it was hard – the second-hardest thing I’ve ever done, after losing her.

I first started keeping a journal when Azaylia was poorly. Everything was unfolding so fast

I wanted to keep track, so she could read it when she was older. I wanted her to know she’d become an inspiration, changing lives by getting people on the donor list.

Yet having to relive every chapter was so, so painful.

I’d known Ashley for years before we became a couple in 2017. We were both from the same place. We’d been together for a couple of years when he first raised the idea of having a baby.

“Having a child is something I’ve looked forward to my whole life,” he told me very early on – which made me love him even more.

I was so happy during the pregnancy. When we welcomed her on 10 August 2020, there was so much love in the room. We wanted a big family together.

At eight weeks old, we learnt her white blood cell count was sky-high and a doctor told us the words everyone dreads, “Azaylia has got leukaemia.”

After two rounds of chemotherapy and a bone marrow transplant, by February 2021 we finally believed Azaylia would get to “ring the bell” at hospital, a milestone marking the end of cancer treatment. We then planned to fly to Singapore for specialist treatment. That February day, we woke up excited. I wanted us to go out as a family looking smart.

I’d curled my hair and put Azaylia in an animal-print babysuit.

But just 10 minutes before we were due to ring the bell, with all the nurses waiting to clap, we were told the results of Azaylia’s latest bone marrow aspiration were not the good news we were expecting.

Devastated, we didn’t know what to do – tell people to go away? Ring the bell anyway? Then, Azaylia smiled at me and I thought “She’s fought damn hard through every single obstacle, she deserves to ring that bell.”

So we did. Ashley held her while I took her little hand to ring it. Fighting back tears, we were grateful to be hidden behind face masks.

Recalling all these moments again for the book filled my heart, then dropped my heart, and I would stop, cry, and say to Ashley, “I can’t do this any more.” But I wanted Azaylia to look down and know that I have got that strength and be proud of me.

I didn’t know that I was this strong before Azaylia. But when you’re trying to save your child’s life, your strength is tested. You either sink or swim – and we weren’t going to sink.

After losing her, we felt so alone, so isolated. Our days had gone from being hectic – medicines, feeds, changes, chemo, nurses, beepers – to suddenly… nothing. Your purpose, your driving force, has gone. I didn’t know how to give myself nurture or care.

To find out more about Safiyya and Ashley’s work, see www.theazayliafoundation.com.

My GP offered antidepressants. I don’t judge anybody who takes them but I needed to face grief head-on, not block out the pain. Getting on my bike became my release, cycling to Azaylia’s resting place at first. Then, realising that exercise helped me feel less trapped, I carried on.

I found cleaning therapeutic, too. We had to keep our home spotless when Azaylia was poorly, so I carried on with that routine, making the house immaculate.

Our priority became building the foundation. The only way to cope with our pain was knowing that we are helping other children and families. So many are struggling and there’s much to be done.

We’ve just donated over £100,000 to Oxford University for research. We’re trying to advance early diagnosis and make softer chemotherapy available. We’re trying to bring new treatments to the UK, because so many families have to travel abroad to do this. Speaking to other parents in our position is emotional but it gives me more strength, too.

When you’re grieving, there are new challenges every day. I’m only just learning how to deal with seeing kids Azaylia’s age. I’ve got my nephew, Noah, and Ashley’s sister-in-law, Amy, was pregnant at the same time as me. There were only six days between Azaylia and her daughter, and watching her grow “normally”, seeing all the things my own daughter would have been doing, was unbearably painful.

When Azaylia’s aunty Nikki gave birth recently, I was scared to meet the baby. I didn’t want to play with them because I was only used to playing with Azaylia. I couldn’t go to playpits knowing that’s what Noah and Azaylia should be doing together.

It should be me lugging the pram, getting all hot and sweaty looking for toys.

Five children a day in the UK get diagnosed with childhood cancer. Some of these can be left with disabilities from chemo, or they’ve got no hair, or a tube up their nose. I want to teach children to be kind and accepting of each other.

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So I tried to come up with positive things, campaigning to get kids to wear orange – a bright, cheerful colour – to school for a day to remind them to be kind to each other.

Being Azaylia’s mum was the best job in the world. At first, I felt I’d never want another baby – no one could replace her.

But I went to a spiritualist who explained that I would be giving Azaylia a brother or sister, and that touched me. My brother, Danny, has been one of my biggest strengths throughout this journey. So to have another child one day, knowing they have the most beautiful guardian angel looking after them, would be special.

In the meantime, I will carry on pouring myself into helping other children and making other parents feel less alone.

And if I can achieve that, then when my own time comes, I’ll feel like I can rest with Azaylia.”

LOVING AND LOSING YOU, AZAYLIA by Safiyya Vorajee is published in hardback by Ebury Spotlight.