From Mummy T: Our beautiful Isla Smiler woke up in August 2017 unable to walk. After many traumatic and invasive treatments, surgery and radiotherapy, Isla was diagnosed as having glioblastoma multiforme (GBM) with diffuse intrinsic pontine glioma DIPG mutation – this meant there was no further treatment options for her and the tumour in her spine had left her paralysed from the chest down.
Simon, myself, our family and friends made the decision to make the most of our time together. Given that Isla was not strong enough to travel far it was amazing what precious memories we made from a small makeshift bedroom downstairs in our front room.
All the way through Isla was beautiful, her story of positivity and the amazing support she had has been documented on Facebook.
As a family we will take it day by day. We are devastated and heart broken that Isla is no longer here with us and we miss her so much, but we face this together, united with the love and support of our family and friends. We will keep on raising awareness of Isla’s story and the devastation caused by childhood cancer, because that is what we do.
Thanks to everyone who has supported us along the way and for your ongoing support and kindness.
Our mission now is to raise money to support research into DIPG and we would be forever grateful for any support you can give.
This is Isla’s legacy and we hope you are proud to be part of it.
About DIPG: DIPG has a 0% survival rate, only 10% of children survive 2 years following their diagnosis and less than 1% survive for 5 years. The average survival is 9 months from diagnosis, this needs to change and with your help maybe we can make a difference for other children in the future.
Fundraising for an Isla Smiler Researcher: Since Isla’s death on the 10th July 2018 we have been contacted many times about fundraising in Isla’s name. We have decided that we would like to focus any fundraising on research into DIPG and childhood cancers.
We have teamed up with Abbie’s Army an official charity to help fund a dedicated ‘Isla Smiler DIPG Trials Researcher’.
We need to raise £73,000 to cover this position for 2 years & with your help we can do it!
About DIPG Research: Abbie’s Army has been supporting Professor Chris Jones’ laboratory for some time at the Institute of Cancer Research. They have been funding, processing and analysing DIPG samples from the UK BIOMEDE trial for DIPG- so far there have been 25 patients processed.
However, we now need to do MORE to progress this research.
Professor Jones’ laboratory is becoming the UK biology reference centre for more DIPG trials, there is now a need to have a dedicated DIPG Trials Scientific Officer in his laboratory to expand the ICR’s capacity and continue the work not only on the BIOMEDE trial, but to include children’s samples from other trials in the UK and Europe.
Abbie’s Army, working alongside #Islastones want to fund this new researcher who will process the trial samples and attempt to establish both 2D and 3D cell cultures in the laboratory. They will ensure the models undergo molecular profiling and carry out bespoke drug screening needed to inform the treating clinicians of the children enroled.
By supporting this research you will be playing a major part in efforts to develop tailored treatments for children with DIPG, in the fastest possible time, with maximum benefit and minimum side-effects.
A targeted treatment is also a ‘kinder’ treatment.
Abbie’s Army will still be funding all the biology for all trials for each patient investigated but we cannot do it all alone.
Please join us to save a life, make a donation, organise a fundraising event and support us today.
“Our understanding of DIPG is rapidly improving thanks to collaborations between scientists, clinicians, funding bodies and families around the world who are determined to defeat these diseases. Thanks to charities such as Abbie’s Army, I truly believe that we are on the cusp of real improvements in the survival of children with DIPG.” – Professor Chris Jones, ICR
In March 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 we each decorated one and asked some friends to hide them nearby. We asked them to post a photo for Isla so she could see where her stones had gone. We set up the #islastones facebook page so we could see the stones. Within weeks the group had grown beyond our expectations. Isla absolutely loved seeing everyones smiles when they posted photos of what stones they had found. During this time Isla’s pain became more controlled and she was bravely hoisted out of bed into a chair. This new found freedom allowed Isla and her family to leave the house and make some even more special memories and allowed her to join in with #Islastones, which brought her lots of joy. Every day Isla received 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. Her film can be viewed by clicking this link:
Since launching #islastones stones have been hidden all around the world, including the Taj Mahal; New Zealand, North Pole, Mexico and a very special wooden stone at the antarctic.