Sumner Malik
There was no stopping ‘Super Sumner’. Following Sumner’s diagnosis with DIPG in September 2016, the Malik family had CED treatment in their sights. Sumner was the first patient in the Harley Street Clinic for treatment in January 2017 following radiotherapy.
Professor Gill and his team saw Sumner’s tumour shrinking following six rounds of combined drug therapy via CED. Sumner had the eight-hour surgery to fit the system on 29th January 2017. He was playing in a national squash tournament just one week later!
Sumner is only the second child that has been treated that was not on progression when receiving the treatment. It was hoped that this will make a big difference to the treatment’s success.
Sumner continued to attend school every day and played squash most days after school. Sumner’s weekends were filled with competing in squash tournaments with his brothers and sister. A triplet, his brothers Bay and Hesty kept him on his toes when he was training. Living with DIPG is a challenge, but Sumner never gave up. This drive and determination, together with the revolutionary treatment, gave Sumner a fighting chance against this devastating disease.
Tragically Sumner passed away on the 11th August 2018 after a long and hard fight 24 months after his initial diagnosis. The pioneering treatment which gave Sumner and his family extra quality time to share together will hopefully in the future help other families. His bravery and spirit throughout his fight continues to inspire the Funding Neuro team to do all we can for all the other children diagnosed with DIPG.
Daisy Brooks
On 3rd May 2014 the Brooks family received the worst ever possible news: their beautiful and much loved six year old daughter Daisy was diagnosed with a devastating form of brain stem tumour called DIPG.
This tumour primarily affects children and has an average life expectancy of one year from diagnosis. Daisy went from being a normal child at school one day, with no sign of illness, to hospital the next. She was having radiotherapy the following week.
Daisy’s parents were told that there was no hope of a cure, but that radiotherapy would ‘buy’ a little extra time to make precious memories with their daughter. The family were told that, if they were lucky, they could expect a few weeks of “good health” before the symptoms would take hold and their little girl would start to slip away.
However, a team of pioneering brain surgeons in Bristol led by Professor Steven Gill, were just at the point in their research where they felt confident in treating a child with their new techniques. Daisy’s parents, with much trepidation, decided to go for the CED treatment.
On July 28th 2014 Daisy underwent brain surgery aided by a software guided robot, to install a device that was made on a 3D printer, which could be used to deliver chemotherapy direct to the tumour. This experimental surgery, alongside Daisy’s incredible bravery and spirit, gave her a shot against this condition and a few precious extra months with her family that included celebrating her 7th birthday. Her procedure and treatment has already produced data that will benefit DIPG children in the future.
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Gughi Grasselini
Five-year-old Guglielmo “Gughi” Grassellini from Italy was diagnosed with a brain tumour in March 2014. He was to become the youngest child to receive chemotherapy via Professor Gill’s treatment.
When Gughi arrived in Bristol for his first round of treatment he couldn’t walk unaided, had double vision, and had no use in his left arm. Following five cycles of chemotherapy, Gughi’s tumour dramatically reduced, he could walk unaided, his vision is improved and feeling in his left arm returned.
Gughi had a further catheter inserted in order to target a different part of the tumour and received a sixth round of infusions. He was the first child to receive a sixth round of chemotherapy in this way. Gughi’s father Matteo said:
“It’s every parent’s worst nightmare, but thanks to Professor Gill and his team we have real hope. The benefits of perfecting this treatment are beyond words. At the moment, these tumours are a death sentence for the children affected. As a parent, I would ask anyone who can support the Funding Neuro campaign to help in whatever way they can.”
Gughi left many heavy hearts when he passed away on 26 July 2016. Beautiful Gughi fought very bravely throughout his treatments and was able to enjoy more time with his courageous and kind family.
Kira Spedale
Kira was a very conscientious child, always concerned with everyone else before herself. She was kind to a fault, and loved being a little kid – she embraced childhood. She excelled at softball, and especially loved playing catcher.
One Saturday in May 2013, Kira was practicing with her team and sisters when she left the plate and came over to her father and said:
“I can’t play. I have a really bad pain in my head and there are two of everyone.”
Kira’s mum, Lisa, immediately whisked her to the emergency room and a brain tumour was soon discovered. Because the tumour was circular in shape with a thick border, they considered it could possibly be an “infection” of some sort.
A biopsy surgery was recommended in order to evaluate the tissue. This frightening surgery was performed the next morning revealing cancer, more specifically, Diffuse Intrinsic Pontine Glioma (DIPG). Kira was one of the first children to receive chemotherapy via Professor Steven Gill’s Convection Enhanced Delivery system. A brave decision by her parents and Kira herself.
Following a 15-hour surgery and a second visit for infusions, Kira returned to school with no neurological damage and no nasty chemotherapy side-effects. The doctors in Chicago kept watch on Kira while she and her family were at home, and her team in England monitored her progress.
Tragically Kira passed away in October 2014, just 6 weeks before her 12th birthday. Because of the pioneering treatment Kira received, she and her family enjoyed extra time together to make special memories. Kira was simply a very special little girl and, like all our DIPG children, has played a huge part in advancing the research to find a cure for this deadly condition.
Aiden Taunton
Aiden was a bright and bubbly little girl, often seen wearing one of her beautiful bows! She was diagnosed with this devastating condition at only three years old in October 2015.
Aiden had been receiving a novel drug via convection enhanced delivery since April 2016, she was the first child to receive this drug. She responded really well and travelled from her home in Monterey, Louisiana, over the next 8 months for regular treatment. Aiden combined the CED treatments with more radiotherapy to combat tumour out-with the pons area.
Very sadly, Aiden passed away in June 2017. Her parents and family are so grateful for the extra time they had with their precious baby. Such a brave little fighter, she always had big bright smiles, to match her big bright bows.
