The Jordan Reid Trust

Raising awareness of children with AT/RT cancer

Jordan's Story

Jordan Reid is just like most five year olds; happy, lively, and living his life to the fullest. But, in June 2016, just one month after his second birthday, and after six months of trips to his GP for what appeared to be a virus, Jordan was diagnosed with Childhood Central Nervous System ATypical Teratoid/Rhabdoid Tumour (AT/RT cancer). In simple terms, Jordan had brain cancer. He was immediately admitted for surgery to remove the tumour and underwent chemotherapy and radiotherapy, but, because of the late diagnosis, Jordan’s cancer is now classified as terminal.

Even during the darkest times, Jordan has remained bright. During his chemotherapy, he could often be seen racing up and down the hospital ward in his grandad Kevan’s wheelchair with his drips at the front, sitting on his grandad’s knee, which Jordan found hilarious. He took his treatment in his stride and loved to help the nurses as they came round to do specific tasks.

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What is AT/RT?

A rhabdoid tumour is a rare childhood cancer that can start in the brain, spine, kidneys or other parts of the body.
There are 3 main types of rhabdoid tumours, grouped together by the locations in which they originate:

1. Atypical teratoid / rhabdoid tumours (AT/RT) – these affect the brain and spinal cord (central nervous system).
2. Malignant renal rhabdoid tumours (MRT) – these occur in the kidney (renal).
3. Extra renal rhabdoid tumours (ERRT) – these occur elsewhere in the body, such as in the liver, lungs and skin.

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Model Railway

Soon after Jordan was diagnosed, his grandfather, Kevan, began working on what he affectionately refers to as his ‘garden project’, determined to give Jordan a haven to play in.

Jordan has an older sister, Abi, and a younger brother, Arron. Along with their cousins, Robbie and Scarlotte, the children play together as normally as any other family.

“Their granny and I give all of the children as much as we can, taking them away for a few days every month, but we wanted somewhere for them here, too,” says Kevan, “I wanted somewhere for Jordan to run around and play and enjoy himself. He needs fun, and I needed to do something.”

So Kevan came up with a plan to build a model railway, born from his desire to give something back to the hospital that does so much for his tiny grandson, and all the other children like him.

“I’m a member of Sheffield Model Railway Society and I got to thinking about how I could use this interest to create something that could help Jordan, and the hospital,” Kevan explains.

Kevan has started work on a 16ft by 8ft model railway which he plans to tour around major UK model railway exhibitions and events, with donations being split between Jordan and the hospital.

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Fundraising for Jordan

Jordan’s grandparents have set up a fund for Jordan’s bucket list, in order to give him the best life possible.

They have attended as many fairs and galas as possible to raise awareness of Jordan’s type of cancer but also to raise funds for Jordan’s bucket list. Jordan’s granny, Debra, works tirelessly on organising a variety of projects and tombolas, and her thoughts are never far from Jordan, and his siblings Abi and Arron.

Find out how you can help. All donations, no matter how big or small, will be greatly appreciated. 

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Our Jordan Reid Trust Facebook Page

Visit our Facebook page for the latest posts, events, photos, videos  about Jordan’s progress, fun trips and fundraising efforts.

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Our Model Railway Project Facebook Group

Visit our Jordan Reid Model Railway Project Facebook group for more information about the progress of our model railway project.

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