9 October 2024

Local Family’s Journey Through Rare Medical Condition Inspires Fundraising Efforts for Southampton Hospitals Charity

In a story filled with both joy and immense challenges, Anthony and Susie’s lives took a remarkable turn with the birth of their twin daughters, Rosie and Poppy. The twins, born on the rarest of days—Leap Day—were already a source of amazement. But what followed for their youngest twin, Rosie, was an extraordinary medical journey that few could have anticipated.

Just days after a difficult caesarean section, Rosie was diagnosed with a rare and complex medical condition. Initially noticed by the sharp-eyed midwives at Princess Anne Hospital, the abnormality was quickly escalated to the expert consultant team at University Hospital Southampton. By day five, the family learned that Rosie’s condition was more serious than initially expected.

She was diagnosed with both Currarino’s triad and a sacrococcygeal teratoma—a combination so rare that it remains largely undocumented.

At just six days old, Rosie underwent the first of three major surgeries. Performed by specialist paediatric surgeons at University Hospital Southampton, the surgery was crucial to removing a tumour that was both internal and external, potentially saving Rosie from a future of cancer, immobility, and incontinence.

Two months later, a second life-saving operation took place, correcting the positioning of Rosie’s genital anatomy and giving her a chance at a normal life. But the challenges didn’t stop there. The family has since navigated a complex recovery, managing catheters, stoma bags, and frequent hospital visits—all while raising Rosie’s twin sister, Poppy.

“Our story has been full of twists and turns,” said Anthony. “But one constant has been the incredible care and support we’ve received from University Hospital Southampton. The staff are truly lifesavers, and we owe them everything.”

Anthony and Susie are now determined to give back. “We’re so proud to support Southampton Hospitals Charity and to know that the funds we raise will go directly into renovating the family room in the neo-natal ward. It’s a lifeline for families going through the hardest moments of their lives,” Anthony explained.

To kick off their fundraising efforts, Anthony will be participating in the Great South Run on October 20th, tackling 10 miles across Portsmouth to raise awareness for the charity. This run marks the beginning of a series of events the family has planned to help raise funds and give back to those who supported them through their toughest times.

As Anthony prepares for the upcoming challenge, he is calling on the local community for support. “We want to thank everyone who has been with us through this journey and ask for your continued support as we give back to this wonderful cause.”

Through their efforts, Anthony and Susie hope to ensure that other families facing similar challenges will have the support and comfort they need during such difficult times.

 

To support Anthony and his fundraising campaign for Southampton Hospitals Charity, click the button below:

Anthony talks more about Rosie and their story so far