Jessica Macqueen was diagnosed with stage 4 alveolar Rhabdomyosarcoma (ARMS) in June 2019. She died in Great Ormond Street hospital in October 2019, just six weeks after her ninth birthday and only 4.5 months from being diagnosed.

Jess was a loving, funny, active, healthy eight year old up until her diagnosis.

Rhabdomyosarcoma (RMS) is a rare type of cancer that forms in soft tissue – it most often affects children and accounts for 5% of childhood cancer cases each year in the UK (circa 60 to 70 children each year). Currently the treatments needed to control RMS are so outdated a child with the same disease 40 years ago would have received the same treatment protocol as Jess. The chemotherapy drugs used were developed in the 1960s, 70s and 80s and there have been very little advancements since due to a lack of funding into research. The chemotherapy used has been designed for adults and is very aggressive for children leading to substantial side effects in the short and longer term. There effectiveness is also not guaranteed. They didn’t save Jess and they have failed many other children that now form other Arcs under the main charity Alice’s Arc.

Alice’s Arc* was set up by Sara Wakeling whose daughter Alice also died 10 days before Jess in October 2019 after a four year battle with the disease. Alice’s Arc works with a network of expert scientists and clinicians who focus on Rhabdomyosarcoma. They work in the major research institutions and leading paediatric hospitals.

The Arcs network was set up after Jess died and has brought together numerous families whose goal is to find less harsh and more successful treatments. Jessica’s Arc was one of the first Arcs to be established and to date we have raised £130,000 in Jess’ memory. Advancements in the treatment of Rhabdo will impact many other childhood cancers, many of which follow the same treatment protocol and use the same outdated chemotherapy drugs. This is a small charity with very low overheads. There are no CEOs and no one gets a wage for the work they do. All money goes towards the mission.

* Alice’s Arc children’s cancer charity (uk ref: 116425)

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