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Grandmother launches Westminster petition calling for more research into DIPG

When her grandson Logan died from a DIPG brain tumour in 2017, Fiona vowed to drive change for everyone affected.

Last month Fiona successfully lobbied the Scottish Government with a petition calling for more research into brain tumours.

She has now set up a Westminstrer petition calling for funds for research into childhood cancers with the worst survival rates.

Logan died from a DIPG (diffuse intrinsic pontine glioma) brain tumour in November 2017, aged just three years old.

Fiona tells Logan’s story: ”Logan, my oldest grandson was born on 31 December 2013. He was perfect. He was blond, blue eyed and with a gentle, sweet nature. He loved dinosaurs and had a magnificent roar!

“He became a big brother on 6 October 2016 and shortly thereafter developed a limp on his right side. My daughter, his mum, was far more concerned than I and had him backwards and forward to the GP and to A&E at the local hospital where he was seen in the A&E outpatient clinic. It was not until the third visit to that clinic that the doctor noted a weakness in his hand and arm on the same side.

“He sent us home but said that he would consult with colleagues and call my daughter back the next day. He did and wanted Logan to come in for a scan. Logan was not quite three, so general anaesthetic would be required. He was admitted that night for a MRI scan the following morning.

“Logan handled the anaesthetic like a champ the following morning but we were told the unimaginable, he had a mass on his brain.

“We were told little else but transferred to a larger hospital for full diagnosis. There were mutterings about DIPG but we were told not to look it up...I was too scared to.

“A biopsy confirmed DIPG and we were told he might have eight months with radiotherapy or six months without. We were told to go home and make memories with him. There was some initial concern it might be a lot less than that and the mums from his toddler group organised an early Christmas party for him.

“He had six weeks of radiotherapy - requiring anaesthesia each and every time and then had only occasional contact with his consultant. We had 11 wonderful months - a Make-a-Wish trip to Croatia, time spent at Calum's Cabin and lots of treats closer to home. He died in his mother's arms at home on 17 October 2017.

“The palliative radiotherapy Logan received was the same as that received by the astronaut Neil Armstrong’s daughter, Karen, did in 1962...that's a measure of how little progress has been made.

“I don't want anyone else to experience this loss and, in Logan's memory, I now do everything I can to raise awareness and support research which is the only way a cure will be found.

“Every child and each of their families need and deserve the cure so they can grow up as they should.”

Fiona and her family have gone through a devastating ordeal with Logan’s death, an experience we are aware of far too often.

Their determination in raising awareness of this terrible disease and fighting for more research into brain tumours, is an inspiration and a source of hope for so many other families in our community facing a frightening diagnosis.

We know that it is imperative to continue to drive for policy change at government level so that vital funds are invested in research.

It’s through the efforts of people like Fiona and her family, that we can change these shocking statistics in the future and bring hope to the thousands of people who are diagnosed with a brain tumour every year.

Sign Fiona’s petition here

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org