Tiana Leigh’s Story

Tiana-Leigh was born 20th July 2006. At birth she already had a breathing problem and was transferred to a Johannesburg hospital at age 3 weeks, where an emergency open lung biopsy was performed. She was diagnosed with a rare and life-threatening disease – and given only a few weeks to live. She was also diagnosed with severe epilepsy and would have up to 5 grand mal seizures a day. These continued for the first 18 months of her life.

In 2012, age 6 the first double lung lavage (washing out of her lungs) via ECMO was performed on Tiana-Leigh which was a huge success. She came off the cpap for two years and coped with 3lt oxygen per minute compared to the 8lt/min.

When one is on an ECMO, blood flows through tubing to an artificial lung in the machine that adds oxygen and removes the carbon dioxide; then the blood is warmed to body temperature and pumped back into the body. This allows the heart and the lungs to rest.

March 2014, Tiana-Leigh was diagnosed with pulmonary hypertension another incurable disease, and prognosis was 8 months. 

Four weeks later another double lung lavage was performed via ECMO, but this time Tiana-Leigh took much longer to recover and spent 2 weeks in CTICU on the ventilator and fully sedated.

When doctors tried to extubate her, they found that her airways had narrowed, making breathing impossible. She was taken back to theatre to have laser surgery done to reopen her airways.

Tiana-Leigh came home on 25 March 2014, but this time on 8lt oxygen and back on cpap at night. She struggled to wean back onto nasal cannula as well as cope on a normal oxygen rate of 3lt/min. Since then,Tiana-Leigh has remained on a high oxygen flow.

On the 20th July 2014, Tiana-Leigh turned 8 years old and had a fantastic princess birthday. On the 21st July she went for her routine check-up, only to have the heart-breaking news that they had no hope for a future and suggested we prepare ourselves and go for counselling etc – but we fought back with Faith and prayers of so many around the world.

November 2015 found us relocating to Christiaan Barnard Memorial, Cape Town, and to new professionals. This time round we were extremely blessed by having doctors and surgeons making Tiana-Leigh a priority and she felt important and more in control.

February 16th 2016, Tiana-Leigh underwent another double lung lavage via ECMO. This time round they could not do both lungs simultaneously. The first lavage on her one lung took 12 hours and the following day the remaining lung 8 hours.

Tiana-Leigh’s DNA was sent to America to the same professor who received her DNA at the age of 3 weeks. Due to unforeseen complications, they were not able to come to a final conclusion on the first set of DNA when she was 3 weeks old. Now with two sets of DNA, and our permission they were able to do the extensive testing needed.

Results came back only to inform us that all these years Tiana-Leigh had been misdiagnosed and actually suffers from a disease called ABCA3 which is also a rare and life-threatening disease of the lungs.

New medication was started immediately seeing Tiana-Leigh in hospital every month for almost 8 months. 

Her lung functions started improving, but her oxygen dependency remains extremely high to this day, and she cannot go without oxygen for more than a minute. 

Damages to the lungs due to non-treatment over the years are irreversible but at least we now know what we are fighting and her new doctors are fantastic and very supportive.

Tiana-Leigh remains onto a cpap to allow her breathing to be easier at night, give her heart more rest as well as try to reduce the carbon dioxide in her blood. She does tire easily and often has pain, but yet she will never complain.

She continues to be on her heart medication as well as other drugs for her lungs. 

Although Tiana-Leigh has been through so much and continues to fight for her life, she does not allow it to get her down. 

In the last three years she has been out to prove to the world that no matter what is wrong with you, you can still enjoy life to the fullest.

Tiana-Leigh set out on her mission and rode passenger with  the V8 Masters, in a Mustang, at Killarney Race Track (and not holding back on the speed either). Tiana-Leigh has also taken to the stage where and when possible singing with various artists. She is also an avid biker, riding pillion with those willing to carry her oxygen on a back pack, followed by a back-up vehicle. December 2021 she along with the biking community and did a mass ride to raise awareness for rare diseases.

The medical costs for Tiana are extremely high, and even though she is on medical aid, only some of the extensive costs are covered.

Tiana-Leigh has taken the initiative to start something called “BluJeanz” – using recycled jeans to create new fashion. These funds go back into her medical. She has proved to be the most amazing young lady, with the biggest heart. So unselfish and has the greatest compassion for both animals and those in need. She is always ready with a smile. Her passion for music is like no other and dreams of presenting on radio.

Sharing her story of Faith, Hope and Inspiration and touched and changed lives all over the world. 

Tiana-Leigh has become the voice and face of Tiana-Leigh Lung Foundation, creating awareness and raising much needed funds for herself and other children suffering from rare and life-threatening diseases. Your help in making this happen will be greatly appreciated.