Alex Bayly, from Hither Green in south-east London, is set to take on the Great North Run in honour of Milo Bayly Sissons, who died in November 2024. Milo had been diagnosed with Wilms tumour, a kidney cancer, just six weeks before, after becoming lethargic, developing a swollen abdomen, and going to the toilet less frequently.
After Milo passed away, Alex and his wife Samantha set up Milo's Mission, a Special Named Fund at CCLG: The Children & Young People’s Cancer Association, to raise money for research into childhood cancer.
The fund has a specific focus on supporting CCLG’s work around early diagnosis and finding kinder treatments for children.
Alex and Samantha said that supporting initiatives to improve early diagnosis is an aspect of CCLG’s work they’re particularly passionate about as, before his correct diagnosis of cancer at St Thomas’ Hospital, Milo had previously been misdiagnosed with both constipation and a viral infection following a trip to an A&E at a different hospital at the end of September.
Alex said:
Milo was misdiagnosed which cost him valuable time and we now know this is common in cases of childhood cancer. In Milo’s memory, we want to raise money to help increase awareness and help other children get diagnosed faster.
He said: “We found CCLG’s website quite early on [after Milo’s diagnosis] and we also read a lot of their literature on children’s kidney cancer given to us at Great Ormond Street Hospital, which was very helpful.
“We’ve also used their resources when talking to [healthcare] professionals, too, especially CCLG’s NICE referral guidelines for childhood cancer symptoms, which we feel should be stringently followed by healthcare professionals.” Alex and Samantha are also backing CCLG’s recently launched Child Cancer Smart, an evidence-based public and professional awareness campaign developed by experts at the University of Nottingham, which aims to improve early diagnosis of cancer in children and teenagers.
Child Cancer Smart aims to raise awareness of the signs and symptoms of childhood cancer and will be developing evidence-based referral guidelines for different types of childhood cancers and decision-making tools to help healthcare professionals understand what tests and scans might be needed.
Alex said:
Child Cancer Smart will help parents to be aware of symptoms that could be caused by cancer and help to empower and educate parents to pursue the correct investigations for their child and to be on the lookout for possible cancer symptoms. These resources will be really important, and had they been available before Milo’s diagnosis, or we’d have known about CCLG’s NICE guidelines, we’d have pushed for further investigations on our first visit to A&E.
An important aspect to Alex and Samantha’s fundraising, Alex explained, is having the opportunity to do something positive in Milo’s name, helping others as the kind and caring toddler would do himself.
Alex said: “He was a really special boy. We're just trying to carry his light forward.
“Cancer happened to him, but we don’t want it to define his life. We want him to be remembered as the loving boy he was.
“We have all this new energy, and we feel very much like we want to do something positive to remember Milo.
“It's ignited a fire and as bereaved parents we need an outlet for that. It's part of our grieving process, to make change or do things that are productive and are going to have a positive impact.
“I feel like we have to make as much noise as possible about childhood cancer, and make as much noise about Milo as a person.
“Milo was so brave and compassionate he loved having his family around him. He loved helping at nursery, helping me with gardening, playing football, puzzles and dinosaurs.
“His smile lit up the room and he was always laughing, happy and having fun. We miss him immensely but want to do as much as we can to raise awareness for Wilms tumour, early diagnosis for childhood cancer and kinder treatments for children.”
Supported by family and friends, Alex and Samantha have already raised more than £20,000 for children’s cancer research, through a number of events and challenges. This included Milo’s cousins, grandparents, auntie and uncles walking 901 miles – representing the 901 days Milo was alive – in the days leading up to what would have been his third birthday.
Music teacher Alex is now preparing to add to that total when he takes part in the Great North Run on September 7. He explained that running holds personal significance for him, becoming a vehicle for his grief following Milo’s death by allowing him time for reflection and remembrance.
He said:
I’ve found running has been a huge part of my grieving process. I started going to Park Run every Saturday from January, and when I’m running, I use that as a time to think about him.
Joining Alex on the Great North Run will be Milo's auntie Joanne Elwood, her friends Julie Vinson and Aimee Gummer, and his friend Jake Longley.