Tiana’s Story
Tiana Leigh Farmer was born 20th July 2006 in Harare, Zimbabwe. She had respiratory problems from the minute she was born and went to ICU immediately. At age 3 weeks I was told to fly her to SA as they did not think she would make the next 48 hours. Through family and friends we raised enough money to fly Tiana to Sunninghill, Johannesburg, a day after my own father passed away.
An hour into flight Tiana stopped breathing and was declared “dead” by the accompanying flight doctor – only to take another deep breath a few minutes after this!!
At the airport they refused Netcare 911 onto the runway and charged me R700 to lift Tiana off the aircraft with the airport ambulance. Little did I know that the envelope that was stuffed into my hands by an old lady at the Harare airport contained exactly R750!
Once we reached the hospital another problem…they demanded that I put down a deposit of R100 000-00 because I had no international medical, we were foreigners and Tiana was a high risk patient. A friend of mine from Zimbabwe transferred US$1000 into their account and another friend whose child had just been discharged from Sunninghill gave the remainder of what was left from his daughter’s heart operation. I was given 5 days to raise the rest of the money. The next morning Tiana was wheeled into theatre for an open lung biopsy where she also experienced a major seizure. Diagnoses 3 days later revealed that not only was she severly epileptic (suffering up to 9 seizures a day) but she had an extremely rare and life threatening lung disease – pulmonary alveolar proteinosis. Prognoses was that she would not live beyond 8 weeks!!
On the same day as her biopsy I received an email via the hospital from Southern Suns saying that they had heard of little Tiana and had made the donation and deposit of R100 000-00 – same hour another email from Cipla Med R80 000-00!!!
So the battle started as we went day by and by week 8 it looked like we were going to lose the battle, but the following day it did not look like Tiana at all. Everyone was shocked that she had taken a turn- for the good!
Then came the issue of the mask for the lung machine…nowhere in the entire world could we source a mask small enough to fit her face for the lung machine. I was told by an arrogant salesman to deal with it as Tiana would just have to grow into it. I retaliated saying God will provide, and yes He did! The following day our guardian angel called me saying he was sent to make a mask for our little princess. The same day Tiana was back in theatre for a mould of her tiny little face and 7 days later the Tiana Mask was launched! Today the same original mask is being made to save the lives of little babies.
Tiana grew from strength to strength and stole the hearts of many. At the age of 5 months doctors decided I could fly her home. One more problem… I needed to buy the life support equipment to take home – a rough estimate of R250 000-00. ETV came forward and did a story on Tiana and in a matter of 30mins viewers had called in and donated over R300 000-00! Netcare wrote of my hospital account and also sponsored the ambulance, flight doctor as well as an oxygen machine. The rest was used for medical supplies to be flown to Zimbabwe as there was nothing available. And so Tiana got to go home for the first time in 5 months to meet her siblings! At the airport our flight was delayed by 12 hours due to Tiana’s machine being faulty as we boarded. We spent the entire 12 hours at the airport clinic where Marc (an arrogant guy running the clinic) ended up working overtime as he grew attached to Tiana and by early evening gave his heart to Jesus!
When we left SA, Tiana was still on permanent life support including the oxygen 24/7, she could not swallow and was fed through a tube in her stomache, she had no muscle control and this is how they said she would remain.
Once home, the paediatrician said to train her to use her chest muscles to breathe, so for a week we put off the lung machine but kept the oxygen on for one minute – the next week 2 min and then 3 mins and so on. At age 11 months Tiana sat for the first time and at 14 months could have longer periods off the lung machine.
At 18 months of age Tiana was diagnosed with Wilms tumour – kidney cancer! Once again we struggled to get the money for flights etc to return to SA. The tumour was doubling in size every 48 hours. Day 2 I received a phone call from Cape Town, a businessman, Mr Cohen from Mac Steel. He wanted a letter from the doctor confirming Tiana’s condition and a photo. An hour later we were at the airport as he had chartered a private plane to fetch my family!
27th December 2007 Tiana started chemotherapy at Unitas hospital and the 14th January 2008 her kidney was removed. I was told she would remain in ICU for a minimum of 5 days and two days later she was wheeled into the general wards. Chemo was continued for another 8 months which was really hard on her with all the side effects, but she was brave and inspired each one of us.
She was also crowned in November 2008 Mrs. Style Princess with Lizelle Marais.
February 2009 found us back in ICU for the third time in 12 months. This time Tiana had a virus in her lungs and doctors could not find a cure. When we arrived at hospital we were swamped by bikers who came to visit and pray for Tiana. Christopher prophesied that little Tiana would get worse but God had a plan and would perform yet another miracle in this little angels life and I just had to trust God. The next day she was rushed into ICU in critical condition, put back onto the lung machine 24/7 and her oxygen was pushed up to 14lt/min from the usual 3lt/min. Day three came and all doctors were called in and some consulted overseas. Day 5 I was told that there was nothing they could do for my daughter and I had a choice of going to general ward and staying there or take her home and make her comfortable. I chose to take her home but we were taken to the ward until paper work was done the following day. I cried my heart out and thought How am I supposed to have the faith that Christopher spoke about? My friend Christa from Choc came to sit with me early evening, later I received a call from a friend Jean Pierre Bekker who had heard about Tiana’s condition in hospital and the prognoses. He told me to put the phone to Tiana’s ear and prayed for her until my phone felt like it was burning my hand. He spoke to me and told me to dry my tears and believe because God’s plan was coming together. What a difficult thing to do when others tell you there is no hope. A few minutes later Tiana started vomiting hugely. I demanded to bath her to clean her as everything was in her hair. So after much arguing doctor and sisters gave in and resus equipment was put on the bed “for just in case”. Christa helped me take Tiana off the machines and we turned oxygen down from 9lt then to 3lt and put on the nasal cannulas (normal one is weaned off oxygen). With Tiana in the bath I lay her down flat to wet her hair and left her there for a short bit, as I brought her up out the water my child was healed right there in front of my eyes – she started splashing and playing – all we could do was say thank you and cry! It was like a baptism! We asked the sister on duty to phone the doctor and an hour later she was still sitting at the desk with her hands in her head and no calls made. Asking her why she said she did not know what to tell the doctor! Needless to say doctors came rushing in and were wowed! The following day Tiana walked out of hospital on her own two little feet. At the door the sister from the day before met us and said that she had asked God a week before that if He was real then to please prove it, and He most certainly did! She gave her heart to Jesus!!
Tiana has been in and out of hospital since then but came out within a few days. The Tiana Leigh Lung Foundation was launched for Tiana and other children who suffer from rare and life threatening lung diseases and who are on permanent life support. The motto for the foundation “Dare to thrive-not just survive.”
We have also launched ICE for bikers- a 24hr medical data base for bikers in case of emergency. This was to say thank you to all the bikers out there who have stood by us over all the years and have loved and supported us unconditionally. Tiana is known as the Biker Angel by many of them. All proceeds of ICE goes directly to the foundation and our motto “Helping Tiana save a life”.
This year Tiana was also crowned International Pricess of Hope with a few other little angels who have all inspired us.
Today Tiana is 5 years old. Though still on permanent life support, she only sleeps connected to the lung machine at night time. She has never had another seizure since a year old. She is still on oxygen at 3lt/min but is a normal little girl who enjoys life to the fullest. She has full muscle control and has started eating puree foods in the last year as she is unable to chew. She enjoys horse riding, bikes, animals, music and so much more.
Tiana has a passion for Jesus and will not go to bed before saying her prayers. When Cameron was involved in an accident in March, Tiana drew and sent him a Jesus cross because she says it would make everything better. When it rains and it thunders, she gets super excited as she tells us that Jesus is talking to her! When she feels unwell she will pray and ask “Jesus please make me better” and she believes it. At her small age she prayers for everyone in the family to be happy, and thanks Jesus that He loves her. All this out of her own, no one tells her how to pray, makes one take a look at one’s own life…
Hence the name of our ministry – Silent Witness, Touching Lives!
