Loey-Dietz Syndrome

Loey-Dietz Syndrome is a rare connective tissue disorder that Jovina, a cheerful and kind-hearted 8-year-old girl suffers from.

Jovina was born with cogenital heart disease and clef palate. After undergoing genetic testing, doctors confirmed that she had Loey-Dietz syndrome. Following her diagnosis, Jovina has been attending follow-up treatment at NUH.

The brave young warrior has been through many surgeries since birth. Her cleft palate and hernia were repaired. She also underwent multiple ear surgeries.

Her first surgery for ventricular septal defect was performed by Dr Sriram Shankar. However, she had some complications, like an aortic valve leak and tortuous aorta, that could not be solved then. Her family intended to wait for Jovina to get older before addressing those issues.

Major Heart Surgery Needed

A recent scan revealed that there was dilation, which meant that a major heart surgery was necessary and it could not be delayed any longer. This surgery will address issues relating to the aortic valve and the aorta.

Jovina struggles with her daily activities as she feels extreme lethargy, dizziness and headache.

As Dr Sriram Shankar has  left NUH for a private hospital, the fees involved for the heart surgery are quite significant. The surgery has been scheduled for 19 July 2022.

According to a memo by Dr Sriram Shanker, the surgery will involve midline resternotomy, bentall operation (20 – 22mm) valve conduit, replacement of head and neck vessels, and stent graft of the descending aorta (20mm graft).

Fundraising for Jovina’s surgery

Jovina’s mother looks after her on a full-time basis. Jovina’s family have, thus far, managed most of her medical expenses through subsidies, medisave, medishield and medifund.

However, the news of the necessity of the urgent surgery and the fees involved have left them “devastated and lost.”

They turned to crowd-funding to raise the SGD 160,000 required for Jovina’s heart surgery. Jovina’s campaign on Give.Asia has raised more than SGD 91,000 so far.

The campaign has been verified by Give Healthcare on 21 June 2022. This verification process involves contacting and meeting the fundraiser as well as the beneficiary, reviewing financial, medical, and other applicable documents that offer evidence of the need.

90k+ SGD Raised by 800+ Givers

More than 800 people have generously donated towards Jovina’s surgery. Many of them left messages of support for Jovina and her family.

Jovina’s family says that she isa very cheerful and kind hearted girl.

Despite all the challenges that she faces, Jovina has always been very compassionate, friendly and always with a smile on her face.

Please give Jovina a chance to live normally. If you can, please donate. If you can’t, do help to spread the word.

Since you have made it to the end of the article, follow Wake Up Singapore on Telegram!