A couple whose seven-month-old son died of a brain tumour last year have spoken of their gratitude for the “amazing” support they have received since moving back to the Keswick area.
The kindness will see all proceeds from the sale of cupcakes at the Relish takeaway cafe in Keswick this bank holiday weekend being donated to CLIC Sargent.
The charity supported Matt Hall and his partner Amy Walsh, who live at Storms, near Keswick, as they went through the heartbreak and trauma of losing Rory.
Amy gave birth to their son in May 2019 and just four-and-half months later he was referred for an MRI scan by medics at Bristol Eye Hospital after developing what the couple believed was a lazy eye.
The scan quickly diagnosed that Rory had a cancerous tumour on his brain stem.
At Bristol Royal Hospital for Children, Rory underwent major brain stem surgery.
“We were devastated to learn that the biopsy result showed that the tumour was medulloblastoma, an aggressive type of high grade cancer very rarely seen in babies,” said Matt, who met Amy, a former freelance actor when he worked as head of production at Keswick’s Theatre by the Lake.
“Rory was too young to undergo any radiotherapy treatment for the cancer, and so he began an intensive and gruelling chemotherapy regime two weeks after surgery,” added his dad.
Rory’s second round of chemotherapy went wrong and he was admitted to the hospital’s paediatric intensive care unit on Christmas Day 2019.
But as a result of the intensity of his chemotherapy treatment, Rory contracted veno-occlusive disease (VOD) which subsequently led to multiple organ failure and he died on January 11, 2020.
The couple are raising funds in Rory’s name to research medulloblastoma and to give back to the wards and charities that helped them.
The fund will also progress the search for kinder treatment regimes which are less likely to result in devastating side effects such as VOD.
“Rory will forever be our hero and our daily inspiration to live life full of purpose and love,” said Matt who grew up in St John’s in the Vale and now works as a theatre consultant for Charcoalblue.
“We will do so much good in his brave, beautiful spirit,” he added.
Amy, an arts administrator for The Tobacco Factory Theatre in Bristol, and Matt said CLIC Sargent had been present since Rory’s diagnosis and continued to help them.
Besides sourcing grant funding to make up for lost earnings, the charity can also help cover some of the unexpected funeral costs and offer pastoral care. The couple said that its support and guidance had helped make Rory’s diagnosis and death a far less lonely and terrifying experience.
Since moving back to the Keswick area three months ago, the couple, who now have a son called Finn, have been moved by the support they have received from the local community and are grateful to Alison Lamont, at Relish in Main Street, for this weekend’s fund-raiser.
“It’s really touching that people are thinking of Rory and choosing to put on fund-raising events in his name,” said Matt.
“It would have been his second birthday on Wednesday this week. I think that is why Alison picked this bank holiday weekend,” he said.
Alison, who worked at the Theatre by the Lake with Matt, said she would be disappointed if she did not raise £500 this weekend.
“Since Rory’s death, Matt and Amy have carried themselves so well,” said Alison.
“They have been such an inspiration to people in a similar situation. It’s humbling that they can behave the way they do when they have been through so much,” she added.
