A family from Salford are marking International Rare Disease Day by sharing their daughter’s remarkable story and raising vital funds for Manchester Foundation Trust Charity, after she was born with a rare tumour that required urgent specialist surgery at Royal Manchester Children’s Hospital (RMCH).

Manchester Foundation Trust Charity raises funds to enhance NHS provision, supporting 10 hospitals with state-of-the-art equipment, pioneering research, and improved environments for patients across Manchester, Trafford, and beyond.

Maisie’s Story

Amy and Tom Dootson’s daughter, Maisie, was delivered last February via an emergency C-section at their local hospital. Immediately after Maisie was born, nurses noticed a lump at the base of her spine, something her parents had no idea about during pregnancy.

After undergoing an MRI scan at her local hospital, Maisie was diagnosed with a rare benign tumour known as a sacrococcygeal teratoma. The condition is a congenital tumour affecting around 1 in every 40,000 babies born.

Following her diagnosis, Maisie was transferred by ambulance to the Paediatric Intensive Care Unit at Saint Mary’s Hospital before undergoing specialist surgery at RMCH just days later.

Amy said: “Maisie’s diagnosis to treatment happened very quickly. After her successful surgery she spent 12 days recovering in the hospital.

“Maisie came home with an open wound that was extremely sore, we were told that she had a risk of infection as her scar wasn’t healing as it should. We had multiple visits to RMCH’s A&E ward for specialist wound care.

“The staff at RMCH were incredible during this time and worked to make sure that Maisie’s wound was properly cared for so that it could fully heal, even making sure that the vacuum dressing was the right size for her, as it doesn’t come in baby sizes.

“We were supported by outreach nurses at home over the course of several weeks, enabling Maisie to make a full recovery. She’s now thriving and is hitting her development milestones; Maisie is doing everything any other baby would do.”

Maisie now attends surgical reviews every three months at RMCH, where doctors check for any signs of tumour recurrence. She also undergoes regular blood tests and ultrasounds to monitor her kidneys and bladder, as surgery in this area can potentially affect nerves controlling bladder and bowel function.

Amy added: “It’s the waiting that’s hardest. Waiting for appointment dates, waiting for blood test results. You’re constantly wondering if anything might come back.

“We don’t know what the long-term impact might be, especially when she starts school. There’s always that uncertainty, but we feel reassured knowing we have such an incredible hospital supporting us.”

Fundraising for our Charity

Grateful for the care they received, Amy and Tom were determined to give back. Last May, the couple signed up to Manchester Foundation Trust Charity’s Walk Your Way Challenge and went on to walk an incredible 100 kilometres around Salford including along the Loop Lane and pram-friendly paths at RHS Garden Bridgewater.

Supported by their family and friends, the family raised a fantastic total of just under £2,000 for MFT Charity.

The family recently returned to the hospital for a cheque presentation, bringing their fundraising total to almost ten times their original goal.

Amy said: “People didn’t just donate money, they donated kilometres. Our wonderful friends and family walked in their own time and shared their progress with us. It meant so much knowing people were thinking about Maisie and throwing support behind such an important cause.

“We feel incredibly lucky to have Royal Manchester Children’s Hospital on our doorstep. The surgeons, nurses and outreach teams have been amazing. Fundraising was our way of saying thank you and of helping other families who might find themselves in a similar situation.”

Marking Rare Disease Day 2026

Amy hopes that by sharing Maisie’s story on International Rare Disease Day, they can raise awareness of sacrococcygeal teratoma and reassure other families facing unexpected diagnoses.

Amy added: “My advice would be to seek information from reliable medical sources and speak directly to your healthcare team.

“Lean on people you trust, as it’s an emotional and sometimes traumatic experience, and having that support system makes all the difference.

“We’re now optimistic about the future, especially as Maisie is happy and strong. We’ll continue attending her three-monthly reviews. Whatever the future holds for us, we aren’t facing it alone.”

Relationship Officer at Manchester Foundation Trust Charity, Anna Rosehill, said: “Maisie’s story is an inspirational reminder of the difference our supporters make every single day.

“Thanks to incredible families like Amy, Tom and Maisie, we’re able to go above and beyond for patients at Royal Manchester Children’s Hospital. Support from our fundraisers helps to provide enhanced equipment, improved environments and vital support services that can make such a difficult time a little bit easier for patients and their families.

“We’re so grateful for their fantastic fundraising and for sharing their journey to help raise awareness this International Rare Disease Day.”