Young Enfield cancer survivor stars in national charity’s campaign for Childhood Cancer Awareness Month

A 4-year-old childhood cancer survivor from Enfield is starring in a national campaign by the UK’s leading charity for children and young people with cancer, Young Lives vs Cancer.

The campaign is calling on the voices of children with cancer to be heard and not forgotten, as they continue to face the challenges of treatment during a global pandemic.

Sumayyah Hassan was first diagnosed with cancer in August 2018 at just 19 months old. After living in Great Ormond Street Hospital for six months while on treatment, Sumayyah was home for just five months before the cancer returned.

Young Lives vs Cancer is also calling for children with cancer to be seen for more than their diagnosis. Sumayyah loves to play dress up, painting and making crafts and when she grows up, she wants to be a doctor or a postman.

In June 2019, Sumayyah and her mum Amira were in hospital for Sumayyah to have a stem cell transplant, donated by Amira. Sumayyah suffered side effects from the transplant and in March 2020, her Mum found her unresponsive suffering with seizures at home. As the country was in lockdown, they returned once again to GOSH where they then stayed in a room for three months, without any visitors.

Sumayyah is sharing her story this Childhood Cancer Awareness Month to shine a light on what life has been like for a child with cancer – and why children like Sumayyah cannot be forgotten.
Amira said: “She started feeling unwell with tonsilitis and a fever. I went to the GP and he checked her and said it’s a mild case of tonsilitis and she’ll get better with a week’s course of antibiotics.

“My heart kept telling me something’s not right and I just felt uneasy. I kept going back and forth, I felt at this point that I wasn’t being heard, I wasn’t being taken seriously. I knew something was wrong with my child.”

After months of back and forth, Amira took Sumayyah to A&E. She wasn’t eating, she was underweight and very poorly. Finally, bloods were taken and tests began.

Amira recalls: “Late at night when she was asleep, the team came and told me ‘I want to talk to you in private’. Everybody sat there I noticed a table, there was water and a box of tissues and everybody was looking at me, I just couldn’t think what was going on but I knew this wasn’t going to be good news. And then the doctor looked at me and said ‘your daughter has leukaemia’. That’s when everything fell apart.”

From that moment, Sumayyah and Amira stayed in Great Ormond Street Hospital for six months, with just the clothes they came in. Once they were finally home, it was only five months until they were back again and Sumayyah tragically relapsed.

“We were home trying to live a normal life and five months later Sumayyah was taken back into hospital. It was a big shock. It was difficult as this time Sumayyah needed a transplant.
“My Mum had to come from Tanzania to assist me for my daughter’s transplant because I was told it would be a few months and she would be in isolation and so I needed extra support.”
A Young Lives vs Cancer social worker helped Amira with the supporting documents to help apply for her mother’s visa to come over from Tanzania, to help throughout the transplant.

Sumayyah had her transplant in September 2019 and by the end of the year, she was back home and doing well. She was put on steroids to manage the side effects of the transplant.

But suddenly, in March 2020, Amira had to make an emergency call when she found her daughter lying unresponsive on her bed. Sumayyah was having a seizure.

From then, Amira and Sumayyah spent three months in hospital during the national lockdown. They couldn’t have any visitors so it was just the two of them back in an isolated room once more.

“It was one of the most intensive things we have gone through with everything – nobody to talk to, the social interaction with other parents was limited because the kitchen had only one person in and out so we had no one to talk to, you couldn’t meet other parents easily and communicate, it was a vulnerable time.”

Amira suffered from PTSD while in hospital with Sumayyah, and reached out to her Young Lives vs Cancer social worker for support.

She said: “I kept replaying the images in my mind, the events that happened and if there was any way I could have prevented it. I felt like I nearly lost her. I needed to talk to someone. I spoke to our social worker Adama over the phone, and a psychologist over the phone and it really helped, speaking to someone about it makes a difference.”

Now, Sumayyah is home and doing well despite a few complications and is set to start school in September and hopes to be able to join her friends in the classroom, away from the hospital ward.

Young Lives vs Cancer is making sure children are heard this September as they share children’s stories and experiences first hand – and talk about childhood and their dreams – to show they are more than their cancer.

Rachel Kirby-Rider, CEO of Young Lives vs Cancer, said: “Having cancer when you’re a child is scary, lonely, relentless and painful. Over the past year children have missed out on so much.

“But for many children with cancer they are still swapping classrooms for chemotherapy, still waving at family members through windows and watching friends blow out birthday candles via phone screens. Cancer hasn’t gone anywhere – children are still being diagnosed.

“This year for Childhood Cancer Awareness we want everyone to see children with cancer for who they are and who they want to be. They may be little, but they have big voices and they want everyone to hear them. They are more than their cancer.”

Throughout Childhood Cancer Awareness Month, Young Lives vs Cancer is calling on people to help support families like Sumayyah facing cancer by getting a Young Lives vs Cancer gold ribbon pin badge.

The badges are available at Young Lives vs Cancer charity shops, Morrisons stores, or order one online at younglivesvscancer.org.uk for a suggested £1 donation.

Supporters can also take part in Challenge60 – and fundraise by completing 60 miles throughout the month anyway they like.

From walking, running, cycling or even hopping, supporters will take on the distance of the average 60-mile round trip it takes for a child to travel to hospital for life-saving cancer treatment.

You can find more information about Childhood Cancer Awareness Month, make a donation or shop online at younglivesvscancer.org.uk #MoreThanMyCancer

ENDS   

Notes to editors  

For more information, an interview or images, please contact Emma Gibbons at emma.gibbons@younglivesvscancer.org.uk or on 07932 666163

About cancer in children and young people  

Today, 12 more children and young people in the UK will hear the devastating news that they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.  

About Young Lives vs Cancer  

When a child is diagnosed with cancer life becomes full of fear, for them and their family. Fear of treatment but also of families being torn apart, overwhelming money worries, of having nowhere to turn to, no one to talk to.   

Young Lives vs Cancer is the charity that helps children and young people (0-25) and their families find the strength to face whatever cancer throws at them. The charity’s social workers offer specialist, empowering support, its Homes from Home offer families a free place to stay nearby to the child’s hospital and grants help families to navigate the costs of cancer. We’ve been there before. We’ll face it all, together.  

For more information visit www.younglivesvscancer.org.uk   

Note to sub editors  

Always use our name in full: Young Lives vs Cancer and write it with only the Y, L and C capitalised. But don’t capitalise ‘vs’.  

‘Young Lives vs Cancer’ should be not be abbreviated – it’s not “Young Lives” for short, nor “YLvC”