NiQi, born with Cystic Fibrosis finally got a new set of lungs but sadly her body started rejecting them. Refusing to give up, she is now getting treatment.
At just 6 months old, NiQi During (28) from Hilton, Pietermaritzburg, was diagnosed with a terminal genetic illness called Cystic Fibrosis and abandoned by her mother and grandparents who could not afford to take care of her.
NiQi never heard from her biological family again but was blessed to be welcomed into a loving foster family, who she met while their son was battling the same condition. Mark sadly passed away shortly after NiQi joined the family – at only 9 years old, he had lost his battle with Cystic Fibrosis.
“NiQi has always had a happy spirit and a loving nature. You couldn’t help but fall in love with her. When she was younger, we would always say, her heart is like a South African taxi – always room for one more.” – says NiQi’s guardian, Suzanne Lucas
When the only Cystic Fibrosis specialist left Pietermaritzburg, the family had no option but to relocate to Pretoria as NiQi’s health started to deteriorate.
The move brought it’s own challenges when NiQi’s foster father was retrenched and struggled for a number of years to find a job, adding to the mountain of debt resulting from NiQi’s regular hospital visits.
At just 21 years old, NiQi ‘s lung function reached 17% and doctors warned that she might only have 2 years left to live. NiQi signed onto a medical aid and had to wait an entire year before registering on the Organ Transplant Registry for new lungs, due to having a “pre-existing condition”.
NiQi managed to improve her lung function to 30% as she waited for her new lungs. Hoping for the best, but expecting the worst, the family moved back to Pietermaritzburg, where NiQi had initially chosen to live out her last days.
“As soft as NiQi is she has always been a fighter, she has fought her condition with courage and with grace every step of the way. She went from being bedridden and on relying on oxygen to proving to the world that despite her situation she will always pull through” – says Suzanne
In February 2017, it had been two and a half years since NiQi joined approximately 4300 South Africans on the donor waiting list when she finally got the call that a match had been found!
After an intense, 6 hour procedure and a total of 6 weeks in hospital NiQi was finally able to enjoy a sense of freedom with a healthy set of lungs. Unfortunately for NiQi her joy was short lived. Four days after the procedure she suffered a Pulmonary Embolism and developed Tachycardia Erythmia, a bacteria that damaged her heart.
Finally, after fighting the infection and embolism, NiQi enjoyed 10 carefree months and embraced normality.
“I was eventually able to start working and living life like a “normal” person. I could go out with no oxygen, no wheelchair. I could walk and run without getting tired. For the first time in my life I had a sense of freedom. No one will understand how that felt after struggling to breathe for so long” – Says NiQi
In January 2018, NiQi began feeling tired, was constantly out of breath and she had a feeling something was wrong.
“I was sent for an Open Lung biopsy that caused so many complications, I had pneumothorax after pneumothorax, and landed up staying on hospital for 36 days, 21 of those days were spent in ICU. The biopsy results eventually came back and it was confirmed that I was in chronic rejection – my new lungs were no longer compatible with me” – says NiQi
To stop the rejection, NiQi had 2 rounds of IV treatment that did little to remedy her situation.
Doctors at Pretoria East Hospital have now decided that photopheresis treatment is the best way forward. The procedure, that separates white and red blood cells and treats them with a photoactive drug will slow down the rejection.
In hopes to raise R20 000 towards NiQi’s medical fees, estimated at R100 000 next year, community based organization, Porky’s People, has set up a campaign on donations based crowdfunding platform BackaBuddy in hopes to support NiQi with her upcoming treatment.
The campaign for NiQi’s photopherisis treatment has thus far raised R 5 687.93 with contributions from over 300 donors.
NiQi is currently in Pretoria awaiting treatment and will need approximately 24 photopherisis sessions, which she hopes to begin as soon as possible. Each co-payment for this procedure is estimated to cost around R800.
“Battling a severe medical condition has interrupted what should be NiQi’s most carefree years. We hope the public will support our BackaBuddy campaign, to empower NiQi as she continues her fight against Cystic Fibrosis” – says Theresa Pienaar, founder of Porky’s People.
You can support NiQi by donating here. You can also register as an organ donor here or call 0800 22 66 11 (toll free).
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