Family's appeal to help Ivanna, 4, get life-saving surgery in the USA and to get her childhood back
"If we have not got Ivanna then we have not got anything" - the words of doting dad Jack Potts who is hoping to raise vital funds to enable his four-year-old daughter to get pioneering surgery in the USA which could prolong her life and give her back her childhood.
Ivanna 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.
Dad Jack, 28, who lives in Redhouse, said: “Ivanna currently only goes to school for about nine hours each week as it simply becomes to much for her. Her oxygen saturation levels are around 70–75%, far below the normal range of 95–100%, something which affects her every single day.
“Her lips can sometimes go blue and she often has to sit on the side during PE, unable to do what the other children are taking part in.
“Unfortunately, her case is so severe that she has been classed as a single-ventricle child.”
Since birth, Ivanna has come under the care of the NHS at North East hospitals and has already undergone major open-heart surgeries, including bilateral Glenn shunts, pulmonary artery reconstruction - all “essential, life-saving operations but unable to provide a full solution”.
Jack said he has been told by UK doctors that there is no cure or solution to Ivanna’s condition.
He said: “Here in the NHS, Ivanna has been placed on what’s known as a single ventricle pathway, which would ultimately lead to the Fontan procedure — a palliative operation that creates a single-ventricle circulation.
“While this can sustain life, it is not a true repair and carries significant lifelong complications. Ivanna is also high risk for the Fontan due to her complex anatomy.”
Refusing to accept this is Ivanna’s fate the family have looked far and wide, contacting some of the world’s leading cardiac experts and have now been given new hope in the form of a treatment plan offered from Boston Children’s Hospital.
Jack said: “Doctors at the hospital in Boston have been in touch to say there is a pathway for Ivanna to get her childhood back and potentially save her life.
“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.
“They have expressed concern about Ivanna proceeding with a Fontan, as they are concerned about the outcome given her anatomy and investigatory findings.”
Despite being filled with renewed hope, the family are faced with the prospect of raising almost £250,000 to cover the medical bills, travel and essential follow-up treatment.
Jack said: “I’ve been on the phone to my mortgage lender asking about getting equity out of our home and I have even looked at selling our house and living in hotels - but we simply don’t have the money to cover the cost.
“Doctors in Boston say this procedure can really prolong Ivanna's life and enable her to have the oxygen saturation levels of above 90%, enabling her to do many of the things other children do.
“The procedure has already been successfully used on other children from the UK who’ve been to Boston Children’s Hospital.”
To help raise the vital funds Ivanna’s family and friends have set-up a GoFundMe page. Despite having already raised an amazing £51,000, the family need help to get near to their £250,000 target.
Jack said: “Time is everything right now. Every day we wait, Ivanna’s window for this life-saving repair gets smaller.
“Please, if you can, help us give her the chance she deserves — to run, play, go to school, and live a full life with the healthy heart every child should have.
“If we have not got Ivanna then we have not got anything.”
You can support Ivanna’s cause by donating the family’s GoFundMe page. If you wish to offer any private support then you can also contact Jack via the contact section on the GoFundMe page.