Hattie's Rainbow of Hope Appeal is a Special Named Fund at CCLG raising money for research into rhabdomyosarcoma. Hattie was six when in September 2019 she was diagnosed with rhabdomyosarcoma, a cancer of the soft tissue.
Her mum Helen shares her story…
This all began in September 2019, when Hattie was sent home from school on her first day of Year 2. She had a fever and an awful tummy ache, and for the next week we took her to the doctor who said she was constipated. We took her to the out-of-hours doctor as the pain got worse, but were told the same. A few days later, I took her to A&E as her temperature was rising and I couldn’t keep it down with medicines, and she was still complaining of tummy ache.
They thought it was a stomach problem but nothing serious, and arranged an appointment for the clinic the following week. I just felt something wasn’t right, so took her back to Lister Hospital A&E the next day. A surgeon was asked to come down to see if it was appendicitis as she was in lots of pain, and straight away they said they could feel a mass. She had MRI, CT and ultrasound scans, and they told us they’d found a tumour. We were transferred to Great Ormond Street and then Addenbrookes, where the specialist confirmed it was rhabdomyosarcoma.
It was such a shock. Cancer didn’t even enter my radar. Even when told it was a tumour, it took me a long time to process what it meant. It was really overwhelming at the beginning. My partner Paul and I just said, “let’s get through tomorrow, and see what happens”. It was the only way I could function - by being positive, taking it day by day. Looking too far ahead was too daunting.
We only told Hattie when we got the official diagnosis. We never wanted to lie to her, or give her any information that wasn’t 100% true. We explained it was a cancer, and sometimes in your body things grow that need medicine for them to go away. She had nine rounds of chemotherapy, where she was admitted to hospital. The hope was to shrink the tumour and remove it after Christmas. Unfortunately, because of its position, they’re not able to remove it. So, she then went for proton beam therapy in Manchester, before a year of maintenance chemotherapy.
Hattie’s resilience throughout all this has really helped us. She copes with everything amazingly. She’s always been very strong-willed and I think that has done her really well. Even with this horrible thing going on, she just has so much positivity.
Her brother, George, and sister, Ellie, have been great with her. They’re both amazing, and very caring towards her. COVID and lockdown happened while we were in Manchester, so they weren’t able to visit. It was literally just Hattie and I there on our own. It was quite lonely for us, so to come home and have lockdown together for three months, was actually quite nice.
The support we’ve had is amazing, our family are brilliant and friends have been incredibly supportive. When we were away for six weeks, and people couldn’t visit us, her friends wrote Hattie letters, our families wrote her letters, people were Zooming her.
Even though she missed almost a year of school, her teachers made sure she felt a part of things. She’s doing well now, and is back at school, fitting in like she’s never been away. Hattie doesn’t quite manage full days, but she goes every day that she’s well. She’s enjoying feeling normal, playing with her friends.
Hattie turned seven in August 2020. She’s a little bubble of energy, just trying to enjoy her life, boisterous and loud. She goes to street dance and has just started back again. She just loves to dance - we have discos in the house and glow stick parties! Everybody says she has such a nice smile and that she’s so happy and lovely. She’s incredibly kind and caring - she worries more about other children who have cancer than herself. She wants to do a sponsored event for her fund, which we’ve called Hattie’s Rainbow of Hope Appeal because she loves rainbows and all things colourful.
I read a lot of research papers and medical journals on rhabdomyosarcoma, and found that there’s not been a lot of research or changes in treatment in such a long time. Reading just how little funding there is, not just for rhabdomyosarcoma, but childhood cancer in general, we were actually quite shocked. We’re thinking in the long-term about what we can do, almost in return for the care and treatment Hattie has received. It’s our way of giving back, raising funds to lead to better outcomes for children in the future.
Make a donation to Hattie's Rainbow of Hope Appeal
.
Open an online fundraising page for Hattie's Rainbow of Hope Appeal
.
Set up a regular Direct Debit donation to Hattie's Rainbow of Hope Appeal .
Hattie's merchandise
News
Football club raises funds for Hattie
Research projects funded
Novel models and new treatments for relapsed rhabdomyosarcoma patients
A living review of new treatments for children and young people with relapsed and refractory rhabdomyosarcoma
Learning to predict high-risk rhabdomyosarcoma at diagnosis to improve outcomes for children and young people
Investigating the shape of fusion genes in rhabdomyosarcoma
Fundraising pages
Text CCLGHATTIE to 70085 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 Hattie's Rainbow of Hope Appeal so that your donation is allocated to the correct fund.