Ariana Smiles is a Special Named Fund at CCLG raising funds for research into precision oncology medicine for leukaemia.
Ariana was five years old when in November 2020 she was diagnosed with acute lymphoblastic leukaemia (ALL), a cancer of the blood.
Her mum Stephanie shares her story.
We began to notice something wasn’t quite right with Ariana during the October half-term 2020. She was behaving normally, but she had a few lingering low-grade temperatures. She also suffered from night sweats on two occasions and was sometimes falling asleep on the sofa during the day, which was unusual. Along with the temperatures, we thought this was a bit strange, so we decided to get her checked out.
On 1 November, my husband Chris took her to A&E, where they did some checks, including an X-ray on her chest and a blood test. I was at home with our other girls, and was on Facetime with Chris when the doctor came by and told us, that from the results of Ariana’s blood test, he suspected she had leukaemia.
They sent some further tests to the lab and it was torture waiting for the results. Our worst fears were eventually confirmed at 3pm, 2 November, when we were told Ariana had acute lymphoblastic leukaemia (ALL). This was hugely jolting to hear and not anything we’d been expecting, as she didn’t look unwell. Some of the nurses at the hospital even told us that sometimes they can look at a child as soon as they come in and suspect they have leukaemia, but this wasn’t the case with Ariana.
A few days after her diagnosis, we were in the Royal Marsden, having her port fitted, ready to begin her chemotherapy. Her chemo usually wipes her out at the end of every stage and she usually sits at zero neutrophils, but she bounces back well. By the end of June 2021, she will have received her most intensive treatment, and her treatment as a whole, finishes in March 2023.
Thankfully, she’s not had too many side effects from her treatment, though it did leave her unable to walk for a time. That was incredibly difficult for her as she’s always been extremely active. But, as always, she pushed forwards and made sure she could walk again. It took her a few weeks, but she got back on her feet.
She has also struggled with the steroids, which make her sad and depressed. This is so difficult for us to see, as it’s so at odds with her normal, smiley self and her bubbly personality. Throughout everything, though, she’s been so brave and resilient. She’s really aware of what’s going on, she wants to see and know everything, and has handled everything so well.
I find her quite remarkable. She’s so positive and is always smiling. She’s always been incredibly spirited, larger than life, really. She just wants to be happy, loves to be silly and is very funny. This is why we’ve chosen the name Ariana Smiles for the fund, to reflect the joy and positivity that she brings to us.
We’ve previously raised £45,000 for the Royal Marsden, when over 70 family and friends took part in Jog for January, running on Ariana’s behalf as ‘Team Ariana’. It was originally just me, before more and more people joined in. Ariana even came with us on a few jogs, in her wheelchair.
Knowing we have this support is amazing and demonstrates what can be achieved. People were really engaged and it shows they want to jump in and help, they just need to be given the opportunity. Now, we’ve set up the fund with CCLG to help others like Ariana, by funding research into children’s cancer. Specifically, we want to fund research into genomics, an area which will help target exactly what treatments an individual child needs, and in turn reduce toxicity them, by ensuring they get the right amount of treatment for their bodies.
We want to do our part to help make a difference in this area, and have lots planned, beginning with a charity lunch organised by a parent at our girls’ school. It’s really important as a parent going through an experience like ours, to see things changing, but there’s so much more that can be done.
Make a donation to Ariana Smiles
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Open an online fundraising page for Ariana Smiles
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Fundraising pages
Text CCLGARIANA to 70450 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Ariana Smiles so that your donation is allocated to the correct fund.