We are devastated to share the news that Callum-Lee passed away on 16th May 2020.

Callum-Lee's mum Nicola shared this message on social media:

"My precious boy went to sleep on Saturday afternoon. He is so beautiful and peaceful, we are at the children's hospice until I bring him home. I am so so proud of you my baby being so strong, and I'm staying strong for you my beautiful boy. You are such a brave strong fighter like you've always been. I love you so so much xx"

Callum-Lee’s story

In November 2012 Callum-Lee became unwell. He had a high temperature and pains in his stomach. By Christmas, he was still not getting better and his worried parents took him to hospital.

The doctor at hospital thought Callum-Lee’s stomach muscles were going into spasm and referred him for further tests. But his condition worsened as they waited and his parents took him back to their local GP who referred them to the Royal Albert Edward Hospital in Wigan to see a paediatric doctor.

On 1st March 2013, Callum-Lee and his family visited the hospital where the doctor was concerned that Callum-Lee’s tummy was hard and swollen. Callum-Lee then had blood tests which doctors believed showed he had an infection for which they prescribed antibiotics.

Callum-Lee was discharged after a week. By June he was limping and unable to put any weight on his leg, he had stopped eating and even collapsed at nursery. Doctors diagnosed rheumatoid arthritis on 14th June and referred Callum-Lee to another doctor at Alder Hey Children’s Hospital in Liverpool. On 24th June Callum-Lee visited the doctor who diagnosed neuroblastoma after examining Callum-Lee for just fifteen minutes.

“We were absolutely devastated,” explains Callum-Lee’s mother Nicola.

“We knew we had a poorly little boy on our hands but cancer was definitely not something we anticipated.”

Callum-Lee went through chemotherapy and had surgery to remove the tumour, after which he had his stem cells harvested and transplanted back into his body to boost his immune system.

Living cancer-free

Callum-Lee’s scans came back with no evidence of the disease in December 2014 and life began to get back to normal.

“In the two years, he was in remission we started to enjoy some sort of normality as a family. Callum-Lee went back to school and made new friends, and we went on caravan holidays,” continues Nicola.

“In January 2017 a lump appeared on the right side of Callum’s neck. I contacted his consultant who then sent him for an ultrasound scan and a biopsy – it was confirmed as neuroblastoma.”

Relapse

Since then Callum-Lee has relapsed twice more and has gone through 12 months of chemo regime on the BEACON trial, followed by an oral chemotherapy drug to battle against this devastating childhood cancer.

In August 2018, the family were told the cancer had returned in his neck, in his spine and near his pelvis. Most recently in May 2019, Callum's neuroblastoma came back in his spine and he had emergency surgery to remove 95% of the tumour.

Callum-Lee’s fundraising campaign

Once neuroblastoma comes back, a child’s chances of surviving for longer than five years drops dramatically to less than 10%. It’s why Callum-Lee’s family are determined to keep his options as open as possible. This means they are fundraising in case he needs to access treatment not available on the NHS and potentially overseas. This could cost hundreds of thousands of pounds.

How you can help

There are many ways you can help Callum-Lee: by making a personal donation; holding a fundraising event; getting sponsored to take on a challenge. Download our free Callum-Lee resources (below) to support your fundraising, and we have even more resources, including fundraising ideas, templates and guidance.

Sponsorship Form Event Poster

To donate by text, send “CALLUMLEE” followed by any whole amount up to £20 to 70085. This will cost your donation plus your standard network charge. It won’t matter if you leave a space before the number, if you include a ‘£’ sign or whether you use upper or lower case.

If you’d like help supporting Callum-Lee’s campaign, please get in touch with the fundraising team on 0207 284 0800 and [email protected]

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