A Merrivale, KZN family appeals for help to support their brave daughter with a rare genetic condition

A Merrivale, KwaZulu-Natal family is appealing to the public to help fund the ongoing medical care of their 13-year-old daughter, Tyler Jade Moran, who has an extremely rare genetic condition.

“Our daughter Tyler is the absolute light of our lives,” said Hayley Moran.

“She was born with a rare disorder called DSD, Disorder of Sexual Development which affected her anatomy. Her surgeon and endocrinologist even took her case overseas to get research.”

Tyler has undergone 18 surgeries to date, including a major 12-hour operation that required over 1,000 stitches.

“Two days later, she was made to get up and walk,” Moran said.

“She has endured countless scans, MRIs, and procedures, all with remarkable strength and grace.”

In July last year, further genetic testing revealed that Tyler has an unprecedented combination of chromosomes. “She is truly one of a kind,  she has three sets of chromosomes running through her,” Moran explained.

“She has 47XYY chromosomes, XO chromosomes, and X chromosomes. As far as we know, she is the first documented case in South Africa and possibly the world.”

Tyler has been diagnosed with Jacob’s Syndrome and Turner’s Syndrome, with the latter affecting major organs. “Turner’s syndrome is concerning because it affects major organs and can cause hearing and reproductive complications,” Moran said.

Currently, Tyler requires ongoing medication, including ADHD medication, insulin injections, iron sachet supplements, cholesterol tablets and estrogen therapy. 

“She sleeps with a CPAP machine because she does not have estrogen to keep her throat open at night,” Moran said.

“At the moment, her medications alone cost us around R4,000 a month, not including any additional treatments like human growth hormone or hearing aids.”

The family has been paying for her care independently, but financial difficulties arose when Moran’s husband's work dried up last November.

He does timber harvesting and private growers chose not to harvest their timber. “We sold as many personal items as we could and our cars to try and keep the medical aid going, but we could not sustain it,” Moran said.

She added that even if they rejoin a medical aid scheme, they will exclude pre-existing conditions for 12 months — time Tyler simply does not have, as she is now at a crucial age for puberty and growth development.

Tyler is scheduled for further testing and surgery in March next year related to her reproductive health. 

Moran said that despite the several health challenges Tyler has to endure, she does not let it get her down.

“There is a lot going on in this 13-year-old’s life, but she does everything with a smile and her infectious laugh,” Moran said.

The family has launched a BackaBuddy campaign to help cover the costs of Tyler’s care. “We would be deeply grateful if people could help share Tyler Jade’s story. Her courage and resilience could inspire others while also helping us get her the care she needs,” Moran said.

The campaign can be accessed here: https://www.backabuddy.co.za/campaign/help-support-our-beautiful-unique-daughter

THE MERCURY