Cystic Fibrosis patient’s body rejects donor lungs. How you can help

About NiQi

Upon receiving the diagnosis, NiQi’s biological mother and grandparents abandoned her as they could not afford to pay her medical bills or take care of her.

Although NiQi never had contact with her biological family again, she was welcomed into a loving foster family who knew the difficulties and expense that come from living with someone with Cystic Fibrosis (CF).

Sadly, at the age of nine, NiQi’s foster brother, Mark, who also had CF passed away.

Determined to help NiQi live a full and happy life, her guardian, Suzanne Lucas and her family left Pietermaritzburg, where they had been living when the only CF specialist in Pietermaritzburg moved away. The family relocated to Pretoria to be near to a specialist who could help NiQi.

Their move to Pretoria was not easy, and when her foster father was retrenched, the family struggled for a number of years due to their mounting medical bills.

Despite her many hardships, NiQi has remained positive and managed to see the best in every situation.

Her foster mother, Suzanne Lucas says, “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.”

NiQi’s treatment

When NiQi was 21, her lung function reached 17% and the doctors warned her family that she might only have two years left to live. While waiting for her ‘new lungs’ once she registered on the Organ Transplant Registry, NiQi’s lung function improved to 30% and the family decided to return to Pietermaritzburg so that NiQi could enjoy whatever time she had left in a place she knew and loved.

More than two years later, in February 2017, NiQi finally got the call she had been waiting for that told her that a match had been found.

After a six-hour procedure and six weeks in hospital, NiQi’s freedom was short-lived as she suffered a Pulmonary Embolism and developed Tachycardia Erythmia, a bacteria that damaged her heart.

She again fought this and eventually felt like a normal person, but in January 2018 she sensed that 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 in 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.

Suzanne says, “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.”

What you can do

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.

NiQi is currently in Pretoria awaiting treatment and will need approximately 24 photopheresis 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.

Support NiQi by donating here: www.backabuddy.co.za/niqi-during