Isla was just 6 years old when she was diagnosed with the deadliest cancer of all, DIPG (Diffuse Intrinsic Pontine Glioma).
Isla woke up on 12th August 2017 unable to walk properly and lost all the feeling from her chest downwards. After lots of scans initially the medical team thought Isla had a rare condition called Transverse Myelitis, she received steroids and later Plasmapheresis which involved inserting tubes into her neck to have her plasma cleaned.
After Isla showed no improvements, she was later diagnosed with a tumour in her spine. She underwent a surgery to have the tumour removed and from November was then subjected to receiving 6 weeks of radiotherapy. These 30 sessions would take place daily for five days a week.
Isla came home late December to spend Christmas with her family, but she soon became very, very, poorly and sadly had to be re-admitted to hospital over the festive period. It was in January 2018 that Isla’s family were informed that she actually had a deadly brain tumour and that it shared the same mutation prevalent in DIPG and DMG’s….
there were no treatment options available…and she was given only a few weeks to live.
With the devastating diagnosis the family took Isla home to make as many memories as they could.
It was a painful time for Isla from January until March where she experienced a lot of pain and was physically unable to get out of bed at all. During this time all family and friends could do was spend as many hours as possible entertaining Isla in her bedroom.
In March 2018 we started to decorate stones as an activity for Isla to enjoy with her friends. A friend brought some Sharpies and some stones around and each decorated one and asked some friends to hide them nearby. They were asked to post a photo for Isla so she could see where her stones had reached.
From there on the #islastones Facebook page was born and we could see all the photos and stones created by Isla’s group that were hidden to be found.
Within weeks the group had grew beyond the wildest expectations and most importantly, Isla absolutely loved seeing the smiles of everyone when they posted photos of what they had found. Thankfully during this time Isla’s pain became more controlled and on some days she could be bravely hoisted out of bed into a chair.
This newfound freedom allowed the family to leave the house and make more special memories and allowed her to join in with #Islastones movement, which brought her lots of joy.
Every day Isla was receiving beautiful gifts and stones from people who had joined the group and taken Isla into their hearts. Isla was interviewed on two occasions by the BBC, her dream was to become famous and with over 40,000 people at this point in her group she certainly felt it.
Isla sadly passed away on 10th July 2018 at home with her heartbroken family.
Since launching #islastones stones her group have hidden stones all around the world, including the Taj Mahal; New Zealand, North Pole, Mexico and a very special wooden stone at the Antarctic.
Isla’s family now continue her legacy of ‘spreading smiles’ with ‘The Islastones Foundation’ to share and raise awareness of childhood cancer, and fund DIPG research in memory of their beautiful Isla Smiler.
The Islastones Foundation are a registered charity (1187471) that raises money to support research into Childhood Cancer, as well as awarding financial grants to the families affected.
We have worked on two co-funded projects with the group, supporting a DIPG research position at the Institute of Cancer Research under Prof Chris Jones (£73,000) and donating towards the GD2 CAR-T cell therapy trial currently recruiting at GOSH (£50,000).
To date the group has raised £123,000 with Abbie’s Army to support DIPG research.
You can visit the Islastones Foundation website here: https://islastones.com
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