Lowestoft family’s plea for Jessica in neuroblastoma fight

Published:
4:14 PM July 16, 2022



Updated:
8:23 AM July 17, 2022

A family are facing a desperate bid to save the life of their two-year-old daughter after she was diagnosed with a complex childhood cancer.

Jessica Butler, from Lowestoft, was diagnosed with high-risk neuroblastoma in April 2021 after dark circles appeared under her eyes.

The youngster underwent several rounds of induction chemotherapy, but later scans showed less than a 50pc reduction in the disease, meaning she is not eligible for the next stages of frontline treatment on the NHS.




Nathan, Jessica and Anisa Butler are fundraising for neuroblastoma treatment that isn’t currently available on the NHS
– Credit: Lauren De Boise

Her family are now looking to raise “hundreds of thousands of pounds” in a desperate bid to access potentially life-saving treatment and give her the best chance at beating the disease.

Jessica’s father, Nathan Butler, said: “Jessica has undergone so much for someone so young, having in the region of 30 blood transfusions, 20 scans, four Hickman lines, countless injections and traveling miles around the country for treatment.

“Even after all the treatment she has received she is doing amazingly well.”


Jessica Butler's family are raising funds for treatment for her neuroblastoma.  This treatment is not

Jessica Butler’s family are raising funds for treatment for her neuroblastoma. This treatment is not currently available on the NHS
– Credit: Lauren De Boise

Concerns were raised for Jessica, who loves animals and Peppa Pig, shortly before her first birthday when her parents noticed she wasn’t her usual self, becoming restless during the night which they attributed to teething.

But a few weeks later dark circles appeared under her eyes.

They were referred to the James Paget University Hospital by their GP for an eye appointment but, after being told of the waiting times, they took her to A&E where she was kept overnight for tests to be carried out.

Mr Butler said: “She started having night sweats and we thought she was teething.

“Then we noticed a lump above her eye and she ended up with two black eyes.

“We took her to the GP and I’m shocked they didn’t realize how serious it was.

“In the end I took her to A&E because the doctor wanted to give her an eye appointment eight weeks later.”


Two-year-old Jessica Butler has been diagnosed with neuroblastoma, her family are fundraising for tr

Two-year-old Jessica Butler has been diagnosed with neuroblastoma, her family are fundraising for treatment which isn’t availble on the NHS. Here she is pictured with her dad Nathan.
– Credit: Lauren De Boise

The next day, her parents were told by doctors they believed she had neuroblastoma, before she was sent by ambulance to Addenbrooke’s Hospital in Cambridge.

She had a biopsy the following day and, on April 22, 2021, she was diagnosed and began chemotherapy immediately.

But, more than a year on, after eight rounds of chemotherapy failed to have the desired impact, her treatment options have been limited.


Two-year-old Jessica Butler has been diagnosed with neuroblastoma

Two-year-old Jessica Butler has been diagnosed with neuroblastoma. Her family are fundraising for treatment which isn’t available on the NHS
– Credit: Lauren De Boise

In March 2022, Jessica was enrolled on the MiNivAn trial more than 200 miles away at Southampton Hospital, which aims to improve outcomes for children with relapsed or refractory neuroblastoma by combining targeted radiotherapy with immunotherapy antibodies.

Her latest scans, however, show the disease remains broadly stable.

Neuroblastoma is the most common cancer outside the brain in children under five, with around 100 new cases in the UK every year.

Despite involving the most intense treatment regime, the disease still returns in over 40pc of all children diagnosed with high-risk neuroblastoma.

For children who relapse, the survival rate is less than 10pc, which worsens every time the cancer returns.


Jessica Butler's family are raising funds for treatment for her neuroblastoma.

Jessica Butler’s family are raising funds for treatment for her neuroblastoma, not currently available on the NHS
– Credit: Lauren De Boise

Now, her parents have teamed up with the Solving Kids’ Cancer charity to help them raise the funds to access the potentially life-saving treatment, which could cost millions of thousands of pounds.

A spokesperson for the charity said: “Jessica’s future is uncertain as high-risk neuroblastoma is a particularly aggressive and complex cancer to treat.

“As Jessica has refractory disease and has not responded as hoped to the standard frontline treatment path, this means her treatment options are more limited.

“Sadly, the disease returns in almost 50pc of children and, if this happens, less than one in 10 survive.”

Mr Butler said: “It is a lot of money, whatever the final sum is, but we’ll do anything to improve her chances.”

To support the fundraising appeal, go to: www.solvingkidscancer.org.uk/appeal/jessicabutler

Donations can also be made by texting JESSICA to 70450 followed by any whole amount up to £20.

For more information, go to the Jessica’s Journey with Neuroblastoma Facebook group.

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