According to the NHS, congenital heart disease is one of the most common types of birth defect, affecting up to nine in every 1,000 babies born in the UK. And one little girl from Sunderland was one of those nine affected. Luna Petrucci, now four years old, was diagnosed shortly before her second birthday in 2015. To say thank you to the doctors and nurses that saved her life, the Petrucci family now hold the annual Red Sky Ball. SR News spoke to her dad, Sergio Petrucci. This is Luna’s story.
Luna was born on March 13, 2013 following a normal pregnancy – but the day the new family were due to be discharged, a paediatric nurse checked Luna over – and delivered the news.
“[They] noticed there was an echo on her heart. We were whisked off into a separate area and Dr Abu-Harb, the consultant for the cardiology department [at Sunderland Royal Hospital] examined her,” her dad, Sergio Petrucci, said.
Luna had a “couple of holes in her heart.”
“He told us not to be worried, but obviously at the time the euphoria of having a baby girl in the family, it came crashing down to earth,” Mr Petrucci added.
The hospital said they would keep an eye on Luna, and so the family were discharged.
However, after numerous consultations and just days before her second birthday the family received a phone call.
The SunFM account director, said: “[We were told] checks had been made and a bed was made available for her. [We] had to go in [to the Children’s Heart Unit at the Freeman Hospital, in Newcastle] and they needed to operate on her because in their words she had a ‘ticking time bomb’ of a heart.”
“It’s difficult to put into words how we felt.”
The family went through five days of operations and recovery.
Mr Petrucci, from Ashbrooke in Sunderland, said “That time in the hospital made me realise that there’s always somebody worse off than you.
“At the time you think you’ve got the world’s worst problems but there were a lot of other children in the unit who were in a lot worse [of a] state who were waiting for a heart transplant.
“So essentially waiting for somebody else to die for their [life] to begin if they were lucky enough to be on the list for [a] transplant.
“We were in a tunnel of darkness. [The doctors and nurses] got us through the emotions that we would expect. We were the lucky ones – there are children that don’t make it unfortunately.
“Who’s to say Luna wouldn’t be here today [without them]. I’m eternally grateful for them that she celebrated two birthday’s since that operation.”
Luna’s strength managed to convince the doctors that she was well enough to come home the day before her second birthday.
“She managed to have a princess party that we [had] promised her. She fought through,” Mr Petrucci added.
Four-year-old Luna still has consultations at the Freeman Hospital, but is like any other toddler, as her dad explains.
“She enjoys ballet. She’s just started to ski. She just plays like any other normal little girl. She’s a lovely, smiley, happy-faced child.”
In 2016, the family started the Red Sky Ball – to raise money for the Children’s Heart Unit Fund (CHUF), which is based at the Freeman Hospital.
Mr Petrucci, added: “The unit actually helped save our daughter’s life.
“We are pretty much indebted to them for the rest of our lives.
“We wanted to give something back to say thank you for saving her life.”
At the first event, the family managed to raise £47,000 for the CHUF, which paid for a state-of-the-art heart scanner for Sunderland Royal Hospital.
“There wasn’t enough money from the NHS to buy such a thing so I wanted to make sure that I could give something back to the people that basically diagnosed the problem in the first place and help other children across Wearside.”
“Whatever we can do to help, whether its buying a wash bag for a parent who [has] been called in on an emergency basis then so be it. If we can provide those last minute essentials that people might need then we know that we are making a difference to somebody’s life, making life a little bit more comfortable [at] such a traumatic time,” he said.
This year, the family raised more than £60,000 to support the CHUF at their event at the Stadium of Light.
Mr Petrucci, added: “We’re okay now. Luna’s fixed – if that’s the right word to use.”
“What we do now, this is for the children now and the children of the future as well so hopefully we can create a bit of a lasting legacy.”