Helping a mom and daughter to breathe easy
Request from:
Ernst Wilkins, Financial Advisor
Request for:
9-year old Tiana Leigh and her mom, Alta
Angel:
Alan Roets on behalf of Advisors for Charity, Liberty Life
Sponsoring:
The Advisors for Charity have been very busy over the past few months, raising funds to help Tiana and her family. They have raised R140 000,00 towards Tiana's medical costs and preparation for her double lung transplant.
Background:
Tiana Leigh is 9-years old. She and her older brother and sister are cared for by their single mom, Alta. Little Tiana's medical history is as long as her life. She was in hospital for the first time when she was 3 weeks old. The reason for the breathing problem she was suffering was diagnosed as a very rare lung disease: pulmonary alveolar proteinosis. She has to be on oxygen permanently and cannot live without for longer than 45 seconds. Last year, she was also diagnosed with a rare heart disease, pulmonary hypertension. Tiana's only hope for a "normal" life is a double lung transplant - which will cost hundreds of thousands of rands. Before the money is an issue, she needs to pick up weight. The operation can only be done when she weighs 35 kilograms and due to her fragile health, she weighs under 20 kilograms.
Original request:
Tiana Leigh was born 20th July 2006 in Harare, Zimbabwe. At birth she already had a breathing problem. We flew to Sunninghill hospital at age 3 weeks, where an emergency open lung biopsy was performed by Dr Steve Ponde. Dignosis was pulmonary alveolar proteinosis – an extremely rare lung disease, and the prognosis was 8 weeks! From 1958 to 2006 less than 800 people had been diagnosed worldwide.Tiana was also diagnosed with severe epilepsy and would have up to 5 seizures a day.
Tiana remained in ICU in Sunninghill Hospital for the first 4 months of her life and we flew home with Tiana on full life support at 4 months of age thanks to many sponsors helping with medical equipment and financial support.
Tiana was permanently on cpap – connected to a machine that blew constant air into her lung allowing them to remain expanded at all times. Slowly we weaned Tiana off the cpap and onto nasal cannulas, only to use it at night time. She remained on permanent oxygen 24/7. At age 18months Tiana was diagnosed with cancer - Wilms tumour. We returned to South Africa via the generous help of Mac Steel chartering a plane to fly us out and her left kidney was removed followed by months of chemotherapy. We also became citizens of South Africa in 2007.
Every year since Tiana has been hospitalised with infections and viruses in her lungs and given anything from a few hours to a few days to live.
In 2012 age 6 the first ever double lung lavage via heart bypass (ecmo) was performed on Tiana which was a huge success. Thus she came off the cpap for two years and coped with 3lt oxygen.
This year March 2014 Tiana was diagnosed with pulmonary hypertension another incurable disease. Four weeks later another double lung lavage was performed via ecmo, but this time Tiana has taken much longer to recover and spent 2 weeks in CTICU on the ventilator and fully sedated. They also found when Doctors tried to extubate her that her throat and pulled closed and was taken back to theatre to have laser surgery done to reopen her throat.
Tiana came home on 25 March 2014, but this time on 8lt oxygen and back on cpap at night. She struggles to wean back onto nasal cannula as well as cope on a normal oxygen rate of 3lt/min.
On the 20th July 2014 Tiana turned 8 years old and had a fantastic princess birthday. On the 21st July she went for her routine check up at Sunninghill only to have the heartbreaking news that she has been put on the list for a double lung transplant, and doctors have given her between 18 and 24 months.
She needs to pick up weight at least another 10 -15 kg before a transplant can be done. Tiana is really battling each day, but makes the most of her days.
Tiana remains oxygen dependant and can only survive as little as a minute without it. Although she has not had an easy life, Tiana remains so happy and her faith is so very strong. She touches the lives of every person she meets and is known as God’s very own angel.
Follow-up:
Morning Ernst
Firstly thank you again so much for your help and support with Tiana. I really do appreciate it from the bottom of my heart.
Sorry for only sending this back now, but Tiana started getting ill on Sunday and she only settled down way after 2am this morning. I live alone with my two children, Carel 17 and Tiana 8 – her father is no longer involved in her life as he had signed over all rights in court.
As you know, Tiana has an extremely rare lung disease, pulmonary alveolar proteinosis, and was also diagnosed last year in February with a rare heart disease, pulmonary hypertension. In July 2014 after a routine check-up I was told that she was going to need a double lung transplant as they said she had about 18 months left to live. In order for her to be accepted on the transplant list she also needs to weigh about 35kg and she now weighs 18.6kg.
Tiana still remains on oxygen 24/7 and can only go without for 45 seconds.
This year we were in a bit of trouble as my fiancé left us unexpectedly and with that we found ourselves locked out the house as he never paid the rent for December 2014. Due to this and also an un-paying parent for 2 students I was unable to afford the medical aid – therefore medical aid has been terminated. (As you know I work from home and was registered through Sacai as an assessment centre to teach grades 10 to12. At the moment we are using my garage as a classroom and hopefully we will soon grow and move into a better place.) We are having huge problems getting back onto medical aid at the moment. I have decided to remove myself and my two other children from medical aid and keep Tiana on as only member as I honestly cannot afford to have us all on. It is crucial that Tiana remains on medical aid. We also have an extra expense due to termination of medihelp - Ecomed want to take back the oxygen concentrator keeping Tiana alive as medical aid is no longer paying for this.
Below is the list of expenses. I have tried my best to get this all together for you.
Outstanding accounts:
Dr Steyn R5073.72
Dr Allen R8187.34
Sunninghill hospital R737.51
Pathology R1608 + R3359
Dr. Murfin R4127.61
Lancit Lab R2190.90
Medihelp R4980
Tiana’s current expenses per month:
Medihelp (if we manage): Tiana alone R2800 and family R4230
Oxygen R1600
Supplements R1500 (roughly)
Concentrator R2800
Heart medication R2100
I spoke to the Organ Donor Foundation yesterday and an estimate of R700 000 was given for a double lung transplant (without complications).
I hope this is what you needed. Thank you once again with all my heart. Please let me know if there is anything else you need from me. There is no problem meeting with people, you will just have to let me know when and where.
Blessings always
Alta