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Azaylia Cain was just eight weeks old when she was diagnosed with acute myeloid leukaemia last autumn, but it wasn't long before she became a household name.
The daughter of reality star Ashley Cain and aesthetic practitioner Safiyya Vorajee, who made the decision early on to share her story on social media, Azaylia's smile and her courage reminded us all how precious life is.
Both Ashley, 31 and Safiyya, 34, kept the public up to date with Azaylia’s journey in heartbreaking detail - from regular visits to the hospital to, the moment they learned that alternative treatment in Singapore would not work because Azaylia had become too ill.
They also spoke openly about their own mental health and reflected on their emotions with their followers, even after Azaylia passed away in April. However, sharing so much of Azaylia’s life wasn’t an immediate decision.
“My initial thought to sharing Azaylia's journey was I didn't want to, and that was solely because I didn't want to believe that what was going on was real,” Safiyya explains to Tyla.
“I didn't want to address what was actually happening. I wanted to be in my own bubble of denial to the situation.”
Safiyya and Ashley came to a mutual agreement, with Ashley now adamant that it was the best decision for them.
“I decided, not instantly, but in a very short period of time, that I wanted to share what was going on," he says. "I spoke to Safiyya about it to make sure she was going to be comfortable.”
“The first reason [is to share] what you're the most proud about, what you love the most, what you want to showcase to the world. And at that point, all I wanted to showcase was my beautiful baby.
“And number two, it was a way for us to accept what was going on; for us to be able to deal with it properly.”
Ashley adds: “It was the best decision we ever made. Because not only did we share our beautiful daughter to the world, but we got amazing support from the community, which continues to help us now, in running and pushing on with this incredible foundation, which is going to help so many people in the future and keep our daughter's name alive.”
Safiyya adds: “Ashley took that time to understand where I was coming from and together, we made that decision. It's partnership, it's togethership, and it's supporting each other through a really hard decision and life life experience like that.”
The support from the public and the 'let's go champ' message inspired people across the world, with the illumination of landmarks across the world with orange lights, the colours of leukaemia awareness, to show solidarity with Azaylia. Actor Dwayne Johnson and NBA athlete Carmelo Anthony publicly offered their well wishes.
“The amount of messages that I received, even still now, to say ‘Azaylia helped save my life. I was suicidal. Because she was fighting for her life, I didn't want to take my life for granted.’ That's just stories that are literally touching the hearts of millions of people around the world. It’s incredible,” Safiyya says.
More than 56,000 people signed up to join the stem cell donor register through the Anthony Nolan charity after connecting with Azaylia’s story. Henny Braund, the charity's CEO, said on Twitter in April: “This lifesaving legacy will give countless families hope in years to come and I hope this is of some comfort to all who knew and loved her.”
The £1.6m raised for Azaylia's treatment in Singapore was put into the foundation when it launched in August. The funds will now help individual child cancer patients and bring equipment to the UK which is not readily available on the NHS. This means families will no longer have to raise large amounts of money for their child to have specialist treatment.
Azaylia's parents planned to launch a foundation in her memory long before they had raised money for her intended treatment and when the youngster was still alive. Safiyya says watching the foundation grow is like watching Azaylia grow. “The foundation's small and we want it to live on beyond our years," she explains. "Our vision for the charity is to create longevity.”
On 1st September the foundation made its first donation of £20,000 to Birmingham Children’s Hospital, where Azaylia, and so many other children, are treated for all types of childhood cancer.
They also want to help parents of children with cancer. “We know how important it was for us to smile, laugh and to play every single day with our daughter,” says Ashley. “So we don't only want to help the children, we want to help the parents too.”
A couple of weeks ago, Ashley was spotted by fans in a shop and four male customer assistants there all asked to give him a hug. The five men expressed their emotions and grief as they spoke about Azaylia. “It means a lot to me that it affects people in that way,” he says tearfully.
“It's so good that a lot people do genuinely love my daughter, and do genuinely care about us. And the fact that they're willing to be so open to show their emotions.”
Safiyya says the way she experiences grief changes each day: “Dealing with Azaylia's passing and being able to do the foundation at the same time has been really really challenging and difficult.
“But because that's our purpose in life now, you find that strength, you find that ability to be able to push through and continue and every day, every hour is completely different. One minute, you may be feeling okay, the next minute, it could be the case of having so much anxiety of not being able to do a simple task.
“Being able to have Azaylia's Foundation now and work so hard to help families and children that were in the same position as ours, is something that gets us out of bed in the morning.”
You can find out more about The Azaylia Foundation here.
For baby loss support contact Tommy's www.tommys.org
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