'An opportunity at life': Heart surgery in the US is Benoni tot's best hope

accreditation
0:00
play article
Subscribers can listen to this article
3-Year-Old Kyleigh needs urgent, life-saving heart surgery in Boston. Photo: Supplied
3-Year-Old Kyleigh needs urgent, life-saving heart surgery in Boston. Photo: Supplied

Local tot three-year-old Kyleigh 'Milana' Kista from Benoni was diagnosed with a Complex Congenital Heart Defect at birth and needs urgent, life-saving treatment in the US. 

Kyleigh's condition, known as Tetralogy of Fallot with Pulmonary Atresia, was first described by surgeons as a 'monster in her chest.'

"Kyleigh does not have the valve that connects the heart to the lungs. The arteries attached... are free-floating and underdeveloped and are not connected to her heart. She has a large hole in her heart and survives on 2 collateral arteries, of which one has already started to narrow severely. This all puts a lot of strain on her little body," says Serina Kista, Kyleigh's mom.

Kyleigh has already endured 3 open-heart surgeries and countless non-invasive procedures that have done little to remedy her warrior's heart in her short life.

Read: 'God will send a cure': Toddler lives on borrowed time after rare genetic disease diagnosis

A second chance for Kyleigh

In November 2021, the Kista family's world came crashing down when they were faced with limited options to save their daughter's life in South Africa.

As a last resort, doctors suggested that the family wait until Kyleigh's organs begin failing, at which point a heart & lung transplant would be considered.

As there are a limited number of donors available, and this procedure has never been performed on a paediatric patient before, the family feared the substantial risk their daughter would be subjected to.

"Kyleigh would need to be condemned to significant suffering and damage to her heart and lungs before being admitted into ICU in a critical condition to be placed on a donor list and fight for her life with no guarantee of finding a donor in time ", says Kyleigh's mother, Serina.

In absolute desperation to save Kyleigh's life, the family investigated alternative treatments, finally reaching out to the Boston Children's Hospital in the USA for a second opinion.

Answering their prayers, doctors revised Kyleigh's case and restored all hope that their beautiful little girl could be saved and have a better quality of life.

"They proposed an innovative technique to repair her heart, which they currently perform with great success at the hospital," says Serina.

Also read: Seven-month-old with rare 'bubble baby syndrome' needs life-saving transplant

Time is of the essence to save Kyleigh

Understanding the urgency of the procedure, the hospital kindly offered a reduced rate for the operation, which is still an astronomical amount for the family without power or influence.

To fund the operation in the USA, estimated at R5 000 000 ($295,761), the family has launched a crowdfunding campaign on BackaBuddy, to appeal to the public to support their final and only hope to save their little one. 

"Boston Children's Hospital has given us new hope, and we are holding on to this option with all that is in us. Without it, our little girl will never get the chance to grow up and have a normal, happy, healthy life," says Serina.

An outpouring of compassion

With overwhelming support from at least 1600 donors both locally and internationally, at least R2.1 million has already been raised on BackaBuddy and the family have indicated that they're working toward a deadline (30 January) to raise the entire amount. The money raised will be transferred directly to the medical facility in Boston. 

"We received overwhelming support from family, friends, colleagues and the community. Thank you for the heartfelt contributions, prayers and faith that Kyleigh will not only obtain the money for the procedure but will succeed through the procedure, bringing us to tears."

"We felt hopeless and alone, but we have so many people coming to Kyleigh's rescue to help us give her a future, an opportunity at life," says Kyleigh's mother, Serina.

If you'd like to assist Kista family make their 30 January fundraising deadline, visit their BackaBuddy page Hope for Kyleigh

Submitted by BackaBuddy. 

Chatback:

Share your stories and questions with us via email at chatback@parent24.com. Anonymous contributions are welcome.

Don't miss a story!

For a weekly wrap of our latest parenting news and advice sign up to our free Friday Parent24 newsletter.

Follow us, and chat, on Facebook and Twitter.

We live in a world where facts and fiction get blurred
In times of uncertainty you need journalism you can trust. For 14 free days, you can have access to a world of in-depth analyses, investigative journalism, top opinions and a range of features. Journalism strengthens democracy. Invest in the future today. Thereafter you will be billed R75 per month. You can cancel anytime and if you cancel within 14 days you won't be billed. 
Subscribe to News24