Maatla Rakubu
Maatla Rakubu’s (9) own words: “I was always having headache after dialysis. Some days feeling dizzy and weak. In an ambulance I felt like vomiting. When on PD night I was not happy. Everyday I was on the bed and machine. I was eating well. When my Mom told me we are going to the hospital to receive kidney and liver, I was surprised. I was not ready but I did not refuse and I went through it. When I was awake I felt pains very much. I now feel happy because of the transplant. Pains are few. I am eating well. Thanks for the child that donated me kidney and liver.
Maatla’s Mom: It was on 27 June 2006 when my son, Maatla (6 years then) had an unbearable headache, blood pressure and convulsions. It was discovered to be related to kidney failure. It was a shock for me. The whole family was shocked. He was transferred from Limpopo to Pretoria. He was swollen and was put on seven drips. The diagnosis of Oxalises was confirmed and he was in kidney and liver failure. It was so stressful that I found myself crying for almost the whole day during his stay in ICU.
He started on dialysis and I knew that I needed to adjust all my time now. It was hard to cope in the beginning seeing him in pain and that I could not relieve it for him. The whole family was affected, but with the support of the family, church, colleagues and friends, we coped. His whole lifestyle changed from being a normal little boy to now being tired and restricted and generally weak.
By 31 March 2008, we attended Morningside Medi-clinic where he was treated at the children’s dialysis unit and became part of the KidneyBeanz Trust. By now he was dependent on both Haemodialysis and Peritoneal dialysis which made him more stable, but not the real Maatla I was used too. We met a challenge as Maatla was now just about permanently in hospital, waiting for his organs. It is a privilege and honor to point out the extend of humanity and support he and we received from doctors and staff on the Children’s Kidney Treatment Centre, Paediatric ward and the KidneyBeanz Trust at Morningside Medi-Clinic. It was touching that one thought we deserve such. Thanks to all.
Maatla had to have blood transfusions weekly, sore legs and generally the body paining and limping. Once again, the support gave him strength. He always wanted me to pray when in pain and that also helped a lot.
One the 29th of March 2009, Maatla was called to receive the gifts of life (liver and kidney transplant). It was unbelievable. We waited for this for almost 3 years. We waited in panic but the surgery was a success. He recovered well and his life is just about back to normal.
As a mother, I sincerely motivate other parents to stand up and support children when confronted by whatever illness. Children are strong. I would also encourage all who feel that commitment to donated either blood or organs to do so. I have experienced that one’s offerings sustains one’s living. Please seek help and advice if in doubt. Your blood is needed, your organs are needed for your families and others to survive. May all who took part be blessed abundantly.
Wesley Nel
Hi my name is Wesley Nel, I was born on the 17th September 1983 and I'm 26yrs old.
I was born with what is known as Hypoplactic kidney disease and I'm in need of a transplant. It is has been a long road and organs are scares, being that I have O positive blood I can only receive a kidney from an O positive donor. I have been waiting for nine years for a transplant but because I am what is known as presensitized the chances of transplant via a cadaver are slim. Currently I am having haemodialysis 3 times a week which lasts 4hrs, at this stage I have no kidney's as my second transplanted kidney was removed in 2005 as it was making me very sick. In spite of this I live a pretty normal life, I'm working as an I.T technician for which I studied and got my diploma, I drive and hang out with my friends.
I am about to start a new treatment which will help flush the antibodies from my blood but before we can start I need to have a donor. With the help of friends and family we have decided to appeal to anyone who is an organ donor and who is willing to be tested and is willing to donate a kidney to please contact us I am now in a situation where I cannot wait any longer. A graft has been created in my arm to allow for dialysis however should this graft stop working they will not be able to do another as I have no good veins left that will accommodate a new graft.
The criteria for a donor is as follows, the person need to be O positive which is their blood group, no chronic illness, in good health and a non smoker, preferably not older than fifty.
Tinus Green
When I was two years old I was diagnosed with Nefrotic Syndrome. The doctors decided not to take my kidneys out and I lived on a salt restricted diet without dialyses for until I was twelve.
In grade five I was also diagnosed with diabetes. It was found that the diabetes and the Nefrotic syndrome were not related.
When I was twelve my Mother’s kidney was transplanted into me but after a year the kidney failed. I was placed on dialyses and also on the kidney and pancreas waiting list for possible transplant. After a year I was called in because the doctors said that there was a kidney and pancreas available for me. The transplant was successful, I no longer have diabetes and I am still going strong today. I am currently in grade ten. I am forever thankful to the donor’s family for giving me this new lease on life.
Fabian Oettl
I fell pregnant with our first baby in September 2009. Overwhelmed with joy and fear, we had started to prepare for the greatest responsibility of our lives. We were going to be parents. We were completely overjoyed and the excitement and anticipation of our precious new arrival grew with every stretch of my tummy...Read more... (PDF - 654KB)
Bongikose
My name is Bongikose and I am a patient at the Kidney treatment centre. I had a kidney transplant on the 14th of April 2010. I was on the waiting list for 4 years and the transplant team made it possible for me to live a normal life again and I am so grateful for what they did for me.
I live in Nigel and it was very hard to travel all the time for my treatments and appointments and keep up with school. But everything changed when I received a kidney.
I want to thank the people who made this to happen for me. My doctor, Dr. Gottlich and the sisters at the centre, sister Megan and sister Ingrid and most I also want to thank my mother who was so supportive for the last 4 years. I also want to thank Annamarie for making life easy for me and my Mom with the things that we needed. I also want to thank Cindy for the entertainment in the centre. Every patient even forgets that they are sick when Cindy is around. I would like to say that all patients in the centre they should have hope that everything will be okay as time goes on.
Special thanks to Dr. Gottlich, Megan, Ingrid, Cindy, Annamarie and Mom.
Amina Agmudin
I am a young and bubbly 14-year-old beautiful girl who suffers from Chronic Renal Failure. I have to undergo endless treatment of dialysis. I have pipes inserted to my arm and chest where blood is taken out of my body, gets cleaned and get pumped back in. I have the most amazing doctor in the whole world. He is the most kind and caring doctor and I am definitely sure the best doctor in his field. His name is Dr. Errol Gottlich.
Although it is hard on me and my family, our faith that all will be better soon, never goes away. When any of us are feeling depressed we pray to God to give us strength. It is tough on my siblings because my Mum has to take me three times a week for treatment and each treatment are 4 hours long. We leave our home at 4:45 am and get back home 1:30pm. I feel bad that my Mom has to go with me and cannot be there to see my siblings off to school, but I have an amazing Dad who makes sure I do not feel guilty.
I am currently on the waiting list for a kidney. The only sad part of receiving a kidney from the waiting list is that someone out there has to loose a loved one. I have to say thank you to Orli, my therapist who helps me deal with my feelings, Annamarie who spends quality time with me and brings out my creative side, Lauri, my dietician who ensures the food I get to eat is well balanced, Cindy who is so bubbly she makes me laugh when I want to cry. Alzina who cleans up if I mess and last but not least my two wonderful nurses Ingrid and Megan who plays games with me and encourages me while I am busy with my treatment.
To my family, thank you for being so supportive and being there for me always no matter what. To my twin (Ahmad) thank you for helping me in school, younger brother Abdullah, for being there whenever I need to get my medication and my baby sister Ammaarrah, for sitting with me when I feel sick and cannot go and play. My Mum and Dad, just a very big thank you. Amina Agmudin
Braam
Ons klein Braampie is op die 10de Januarie 2003 gebore. Van die begin was hy soos n geskenkie van God af, wat alles doen wat hy moes en altyd tevrede is. Op ses weke het hy egter nog nie eers weer sy geboorte gewig van 3kg bereik nie, en is hy gediagnoseer met chroniese nierversaking. Van daar af het die lang opdraande pad vir Braam begin met menige toetse en ondersoeke. Dit was n 5 jaar lange stryd om Braam groot genoeg te kry sodat daar genoeg spasie en voldoende bloedstoevoer is om n volwasse nier te kan huisves. Die mediese fonds dek nie die skenker se kostes nie, en ons moes dus self daardie geld insamel sodat Braam sy ma se nier kon kry.
Einde 2007 was Braam eindelik groot genoeg om n nieroorplanting te kry en was daar genoeg geld om die skenker kostes te dra. Na die oorplanting gaan dit regtig goed met Braam. So 6 maande na die oorplanting het hy ook Rickets gekry, dit is sagte bros bene, en die lang bene soos die arms en bene buig. Dit het meegebring dat albei sy voorarms a.g.v. hierdie kromming by die elmboe ontwrig elke keer wat hy sy armpies buig en reguit maak. Alhoewel Braam steeds doeke dra, nog nie kan praat nie en meermale infeksies kry as gesonde kinders, het hy 2010 begin skoolgaan by n Spesiale skool, Alma, en geniet hy elke oomblik daarvan. Hy moet ook steeds maandeliks vir opvolg dokters besoeke gaan waar hy van toontjie tot kroontjie ondersoek word en bloed getrek word om seker te maak alles is reg.
Sonder die Kidney Beanz Trust sou dit maar moeilik wees om in al sy behoeftes te kan voorsien. Hul help met die vervoer kostes na die dokter maandeliks, met kostes soos doeke en met mediese kostes wat nie gedek word deur die mediese fonds nie. Dit is wonderlik om te sien hoeveel die kindertjies wat in die hospitaal moet inbly a.g.v. dialise se lewenskwaliteit verbeter word met volunteerwerkers van die Trust wat met hul kom speel of hul skool toe en terug vervoer. Die Trust verbeter hierdie kinders se lewens op soveel gebiede! Dankie aan elkeen wat n bydrae maak om hierdie kindertjies se lewens te verbeter wat soveel minder kan doen a.g.v. n chroniese siekte.
Thato
My biggest birthday present! 10 year old, Thato has become many peoples little angel, daughter, sister, friend, even mother to her fellow younger KidneyBeanz kids. After being known to our centre for over 2 years now, and being hospital bound since March 2009, she has spent as much time in ICU as what she has on the Paediatric ward, surviving many complications.
Thato has crawled into every persons heart that has crossed her path, with her ability to love, to adapt, to share and to fight. On the 23rd of December 2009, Thato had her birthday party on the paediatric ward and had invited pretty much everybody she knew, from hospital management, kitchen staff, patients and their families.
Everyone cramped into the Hannah Montana decorated room, sharing in her special day. She was overwhelmed with presents and attention as everyone got their little piece of heaven from her. As everyone wished for her, but no one expected, Thato received a very special gift just a few hours later - the gift of life! Her kidney had arrived and she was about to be transplanted a few hours later on her birthday. Thato takes on life as if she owns it, as if she is meant to be in it and to change and touch it with her unique and special spirit. Today, Thato is enjoying her healthy kidney and embracing every opportunity she can. Everyone who has ever invested in her, no matter how big or small, has had their returns by merely just knowing her. Touched by an angel - a feisty one - literally!
Livia Wagner
Livia was diagnosed with an aggressive form of FSGS type Nephrotic syndrome when she was 17 months old. Within one month, she was lying unresponsive in a Neonatal ICU, three months later, a life of dialysis was introduced. We celebrated her 2nd birthday in ICU again following her Nephrectomy that was accompanied by a number of complications. A series of infections, pulmonary emboli, 4 cardiac arrests and a respiratory arrest followed in the next 6 months.
In the first year since diagnosis, she was hospitalised for almost 8 out of the 12 months and at the age of 2 years and 8 months, we were waiting for her to be stable enough for transplantation. We always thought of an organ transplant to be a process associated with pain, fear and limitations, we never dreamt of the wonderful benefits and experiences it brings. She was transplanted and cared for at Morningside medi-clinic with the highest quality of care. She felt safe and comfortable as people around her knew, respected and cherished her as a little girl and patient. As a parent, to be able to donate a kidney, must be the most rewarding experience ever, it’s never a choice, it’s just that one of those kidneys were never yours….just in your body, waiting.
All we wanted was time. We did not even specify how much time, just more time, every other day was a bonus, a gift. We realised quite early on, that we are not in a position to judge her quality of life, but that she decides on how she wants to lead this life of her and she decided on doing it “big”. Her enormous sense of humor, strong character and ability to reason and give reason are admirable and enjoyable for everyone around her. She does not hesitate to recommend some dialysis for a slightly over-weight person (“puffy person”), yet she has the capacity to touch and change lives. We have the tendency to want more, to hope for miracles, wish for better lives, the real gift is to recognise miracles as they happen and we have that in Livia everyday.
Although she had an immediate recurrence of the disease following the transplant and remains dialysis dependent, Livia occasionally attends play school, runs around, laughs out load and proudly enjoys growing up. We’ve learnt to trust her as these kids know their own inner strength and teach us all about the meaning of quality of life.
Miya, Tori and Talent
