Chichester parents raise money for life saving heart surgery

Minnie's mother Charlotte said Minnie was "just the most amazing, resilient little character"

The parents of a six-year-old from West Sussex, who was born with a serious heart defect, are raising money for life saving surgery in the US that could extend her life by decades.

Minnie was born with Ebstein's Anomaly, which causes the right side of her heart not to function properly.

The Chichester family were told Minnie would not make it to her teenage years.

Father Jesse said the potential treatment was a "light at the end of the tunnel" and "everything to us".

Jesse and Minnie's mother, Charlotte, have launched a campaign to raise £140,000 to send Minnie to a specialist centre at the UPMC Children's Hospital of Pittsburgh.

Some patients with Ebstein's Anomaly - a rare condition - can have a procedure to repair the faulty valve, known as cone surgery.

However, Charlotte and Jesse were told by the NHS and a different clinic in the US that Minnie's condition was too severe to benefit from this treatment.

"As she grows, the heart isn't able to support her growth," said Charlotte.

Charlotte said Minnie has low oxygen levels and receives extra nutrition through a tube.

"Because her heart works so hard she is constantly burning energy that she does not have so we have to feed her with triple calorie prescription feed."

A chance

The couple did their own research and approached the Da Silva Centre for Ebstein's Anomaly in Pittsburgh, where the surgery was developed.

On 26 December, they were told by the centre that Minnie did have a chance of having the surgery.

The parents said more tests were needed before the procedure, but if funds were raised and doctors were happy to proceed then the operation could take place later in 2024.

University Hospital Southampton, which oversees Minnie's care, said it could not comment on individual cases but added: "Acting in the best interest of our patients when determining their care is always our priority."

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