It's now our only hope - family of Ivanna, 4, make lifesaving USA surgery plea after being left in UK limbo
“Surgery in the USA is now Ivanna’s only hope” - the heart-breaking words of the little four-year-old’s dad Jack Potts after being told his daughter’s only option in the UK is palliative care.
Ivanna, from Red House, was born with a severe form of congenital heart disease called hypoplastic right heart and heterotaxy syndrome.
The condition means the right side of her heart is underdeveloped, preventing it from functioning correctly and allowing Ivanna to do many of the things other little girls her age enjoy.
Up to this point, Ivanna’s condition had been manged by the Freeman Hospital in Newcastle but the family had been trying to transfer her case to Great Ormond Street Hospital (GOSH), in London - one of the world’s leading children’s hospitals - in the hope of finding a solution without having to leave the UK.
However, the family have now been told that GOSH cannot take on her case, meaning Ivanna has been “left in limbo” unless she can get the pioneering surgery at Boston Children’s Hospital in the UK.
In order to save their daughter’s life Ivanna’s family have set up a GoFundMe page to raise the £250,000 to fly the little girl to the USA to undergo surgery and aftercare.
Jack, 28, said: “Boston is now Ivanna’s only chance - there’s no other option. We had believed that if we stayed in the UK Ivanna would have the option of of a Fontan procedure — a palliative operation that creates a single-ventricle circulation.
“However, doctors at GOSH and Boston have said this is too risky for Ivanna.”
Jack still has hope for Ivanna’s future thanks to a pioneering operation only available at Boston Children’s Hospital.
He said: “The hospital are offering something called a Biventricular Repair Program. This involves multiple intricate repairs to Ivanna’s heart defects, requiring an exceptionally skilled and experienced surgical team.
“Boston Children’s Hospital is one of the few centres in the world with the expertise and success rates for such specialised procedures.
“The surgeon in Boston said Ivanna’s case is a seven or eight out of ten for complexity but he said this type of surgery is his bread and butter and can see a pathway to it being a success.
“They have also said time is of the essence and it’s important Ivanna gets the surgery as soon as possible.
“The hospital have said they can book a date for Ivanna for the end of January and they are already putting plans in place. If she was to become unstable then I hope we could take her out earlier.”
Despite having raised a whopping £133,000 via the family’s GoFundMe page they still remain nearly £120,000 short of the necessary funds which would be required to be paid to Boston Children’s Hospital 21 days before the operation.
Jack, who has been working abroad to try and raise extra money, said: “Everyone in the Sunderland community is doing so much to help Ivanna and we really appreciate everything which has been done. Ivanna has missed out on so much and we just want to give her the childhood and chance of life every child should have.
“Hopefully there may be some local businesses who can help us to find the remaining money.
“Our only hope left is Boston Children’s Hospital in the USA. This isn’t about a better life anymore — it’s about a chance at life. Ivanna’s candle is flickering and we are fighting to keep it burning.
“Every share, every donation, every person who sees this could be the reason she reaches her fifth birthday. Help us to keep Ivanna’s heart beating.” ️
You can donate to Ivanna’s cause via the family’s GoFundMe page which you can also use to contact Jack.
Fireworks for Ivanna
After hearing of Ivanna’s plight the Sunderland based charity the Red Sky Foundation has announced it will be donating 100% of profits from the general admission ticket sales from its annual Fireworks Extravaganza at Ashbrooke Sports Club to the family’s cause.
Dr Sergio Petrucci MBE, founder of Red Sky Foundation, said: “When we heard about Ivanna’s story, we knew immediately that we wanted to help.
“At Red Sky Foundation we exist to support families facing heart-related challenges, and Ivanna’s situation touched us deeply.
“By donating 100% of our general admission ticket profits from our Fireworks Extravaganza, we are bringing the Sunderland community together once again not just for a night of celebration, but to help this brave little girl get the life-saving surgery she so desperately needs.
“Together, we can make a difference and help her family reach their target of £250,000.”
Established in 2020, Red Sky Foundation has raised millions of pounds to help fund defibrillators, medical equipment, improving cardiac care and having a positive impact on heart health in the North East and beyond.
Whilst tickets for the November 5 event are already sold out, you can make a further donation via the charity’s own fundraising page set-up for Ivanna and her family.