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Dedicated parents lead team that raises over £16,000 for rhabdomyosarcoma research this Childhood Cancer Awareness Month


Looking back on childhood cancer awareness month, our Cancer Stories Officer, Lydia Brain, spoke to Ged and Julie Hussey about why they are fundraising for research into rhabdomyosarcoma as a legacy to their son, Jack.

Posted on 29 September, 2018 by Lydia Brain

Jack on holiday

Image: Jack on holiday. Image courtesy of Julie and Ged Hussey.

In 2015 Jack Hussey mentioned to his mum, Julie, that he had developed an uncomfortable lump in his abdomen. He was initially put on antibiotics, after his doctors misdiagnosed him with an abscess.

A few weeks later and the Husseys were enjoying a family holiday in Portugal. Jack’s lump wasn’t responding to the antibiotics and the family went to see a doctor out there.

It was then that Jack was diagnosed with rhabdomyosarcoma – a cancer of the soft tissue, which is most common in children and young people. Jack was just 18 years old.

Undergoing grueling cancer treatment

The Husseys immediately flew home so that Jack could get further tests and start treatment as soon as possible. Jack’s doctors in the UK sadly found that the cancer had already spread, making it more difficult to treat.

Jack was put on gruelling chemotherapy and radiotherapy to treat his cancer. After a course of 26 radiotherapy treatments and a course of chemo, Jack was in remission.

Unfortunately, only three weeks later Jack started having symptoms again. Ged and Julie then received the news that is every parent’s worst nightmare, Jack’s cancer had recurred and this time there was nothing the doctors could do.

Jack’s passion for science

Jack was doing his A Levels when he became ill and had a particular interest in science. He was inspired by cancer research and wanted to raise money for the cause. While desperately ill, Jack managed to raise a fantastic £30,000.

Jack sadly died when he was just 19. Ged and Julie decided they wanted to continue to raise funds for rhabdomyosarcoma research, raise awareness of its symptoms, and the lack of funding, as a legacy to the work that Jack started. 

Jack’s legacy

Julie and Ged Hussey came across Professor Janet Shipley’s laboratory at The Institute of Cancer Research, London.

Ged said: “Janet’s work is very close to our hearts. If anything, it will be her work which makes a breakthrough, we are delighted to be able to support such fantastic research.”

Ged and Julie have held a number of different events to raise money. They have now raised over £120,000 for rhabdomyosarcoma research, and are more motivated than ever to keep up Jack’s legacy.

Ged said: “There is so little funding into childhood cancer research, just 3% in the UK. Childhood cancer is quite rare, but not rare enough. There are too many children getting ill, and with such harsh treatments, research into these cancers is vital.”

Support Professor Janet Shipley's work to improve treatments for children and young people like Jack with sarcoma, an aggressive form of cancer.

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Researching rhabdomyosarcoma

Rhabdomyosarcomas are aggressive cancers that resemble muscle tissue and more commonly occur in children and teenagers. At the moment less than 30% of people with rhabdomyosarcoma tumours that have spread or reoccurred, survive their cancer long-term.

Professor Janet Shipley, Head of the Division of Molecular Pathology at the ICR, who is being supported by Team Jack to do further rhabdomyosarcoma research, said:

“Some of the current treatments for rhabdomyosarcoma are very harsh and leave the patients with severe long term side effects, such as loss of mobility, growth impairment, and an increased risk of developing another cancer as a consequence of their therapy.”

At the ICR, we are leading research into the disease with the aim of improving treatment options for children and young people with this form of sarcoma.

Finding targeted treatments for rhabdomyosarcoma

Professor Janet Shipley and her team are working on identifying new ways to treat young patients with more aggressive disease.

Professor Shipley’s lab have been examining drugs that are currently used to treat other types of cancer to see if they could also be used to treat children and young people with rhabdomyosarcoma. In the longer term, they are working to discover completely new drugs for the disease.

Janet said: “Our laboratory research has increased understanding of what drives rhabdomyosarcomas at the molecular level. Based on this, we are able to select drugs used in other cancers and diseases and test their potential to treat rhabdomyosarcoma patients using new models of the cancer that we have developed.

“In addition, new targeted treatments are opening up the opportunity to personalise treatments for children with cancer based on the activities of specific genes in their tumours.

“We are now translating our research into a new clinical trial, where genetic testing of a sample of the cancer will help identify the low risk patients that will receive minimum treatment intensities to cure their cancers, as well as identify the patients that may benefit from new treatments. The trial is due to start later this year.

“I am so pleased to be involved in this trial and to have the opportunity to translate our research into having a real impact for patients with rhabdomyosarcoma.

“Our team and the ICR are hugely grateful for Ged and Julie’s hard work and continued support to help find new treatments for patients with rhabdomyosarcoma.

“Progress in childhood cancers like rhabdomyosarcoma is a team effort. From our fundraisers, our charity partners, to our scientists, clinicians and support staff, we are all in it together.”

Team Jack

The most recent fundraising effort in memory of Jack was on 12 September. Ged and eight other people who were close to Jack mounted their bikes and rode from London to Paris, raising £16,000.

Ged said: “I actually started cycling when Jack was on treatment. It wasn’t something I had ever done before. I really enjoyed it and found it therapeutic – it is something I have kept up since Jack died. I wanted to hold an event that not only fundraised for Janet’s lab but allowed Jack’s friends and family to get together and remember him.

“Jack was so keen on science and research, it is something he was really passionate about and I know he would have wanted us to keep up his good work. He was actually quite a shy and private person.

“When he got ill, he came out of his shell and became more confident. He was very keen on sharing his story to try and raise awareness, and I know he would have wanted us to continue to raise awareness in his name.

“Jack was completely overwhelmed when he raised £30,000. He initially asked me if I thought he could raise £300 to £400. The response we got when he started raising money was incredible, there was so much support, and there still is. We all do it for him.”

If you would like to support Ged and Julie, you can donate money to The ICR on their Just Giving page.


fundraising childhood cancer rhabdomyosarcoma
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