Donor Family Support

Tear of Hope

After the donation process has been completed, a THANK YOU letter is sent to the donor family. Unfortunately, due to legislative and socio limitations it is not possible to provide much information with regards to the specific use or transplant of the relevant tissue. We do however, endeavour to bring comfort through the confirmation that the tissue will be successfully utilised to improve the quality of life for another person(s).

The Tear of Hope was designed some years ago and still today, every donor family receives this exquisite handcrafted solid glass teardrop as a reminder of their wonderful gift in the midst of a terrible and personal loss.

With it, we say - THANK YOU - and demonstrate the hope and new life that was made possible through their sacrifice of tears.

Each Tear of Hope is handcrafted on order by Retief van Wyk - glass artist and lecturer at the TUT Glass Forming School - the only one of its kind in Southern Africa.

Tear of Hope

Donor Stories of Hope

"I met my wife Lorraine when we were 15 years old.

We were married for 18 years, and she fulfilled every single aspect of my life with so little effort it was amazing. We had it all, two wonderful kids, love beyond comprehension and complete and utter fulfilment. Even though I know that life happens, and it does not always happen the way you want it to, I was in a blissful state of happiness, thinking this will last forever.

One morning my life shattered when I received the news that my wife had passed away in a motor vehicle accident. At first I did not believe it, but the inevitable realization of the fact that my best friend was gone from this earth, just like that, with no warning, broke me.

Through the pain and tears I knew that if Lorraine* had thought about it before this day, she would have wanted to be able to help other people, even in death. It was strange to me that I could have such a clear conviction to donate organs at that moment, because we never really discussed it.

When I was approached a few hours later by a coordinator from CTE (Centre for Tissue Engineering) to ask consent for tissue donation, I knew that it would be what Lorraine* and God would want me to do. Signing the consent form was the hardest thing I ever did, but knowing it was the right thing to do, I signed and gave consent for her bone tissue, corneas and heart valves to be donated.

Almost four months have passed since, and not a day goes by that I don't cry and feel a big empty space in my heart, but knowing that Lorraine's bone tissue will help crippled children walk, her corneas already helped two people see and her heart valves will enable two young people to actually live their lives again, gives me a sense of peace.

Lorraine's* death was not in vain.

The knowledge that the legacy of love and giving Lorraine* believed in, have fulfilled other people's lives, just like she fulfilled my life while she was still here, gives me a great deal of comfort in this painful time.

My wish is that this God-given legacy of love and giving would be embraced by us all, so that everyone who has lost, or will lose a loved one might know the comfort that giving can bring."

Anonymous, 2004
* Name has been changed

"Bone donation had been my son's wish. He used to talk about tissue donation and when he died he would like his tissue to be donated to those who needed it most so as to live on. So, I fulfilled his wishes with an open heart and have been praying daily for those who receive them to recover.

I shall continue to teach people about tissue donation."

Pieter, 2007

Tribute Days

During August every year - Organ donor month - various Donor Tribute events are held around the country in memory of past organ and/or tissue donors. Whilst it is a sad occasion considering the loss suffered, it is also a celebration of the new life made possible through donation.

An invitation to the Tribute Days includes donor families, organ and tissue recipients and staff members in the donation and transplant field. We gather to pay our last respects to those who made it all possible, and for many it has become is a wonderful step in the healing process. Here the transplant recipients are able to tell their stories of how their lives were saved and changed for the better, and the donor family is comforted in the knowledge that their donation has impacted another family in such a special and remarkable way.

Tribute days often include a candle lighting ceremony, the planting of a tree and the release of balloons carrying special THANK YOU notes to the donors.

Recipient Stories of Hope

Nelmari De Beer
Bone Tissue Recipient

For two years Nelmari de Beer (24) suffered constant pain and a series of misdiagnoses. The attractive blonde woman explains how in 2014 her misery began with her experiencing a severe pain in her left side.

Initially she was diagnosed with irritable bowel syndrome. When her pain remained after completing a course of treatment, she went back to her doctor; to be diagnosed this time with appendicitis. But the removal of her appendix still did not resolve the problem, and it was only when a large red spot appeared on her thigh, that she was referred to an oncologist for a biopsy and further tests.

"This was an extremely traumatic time for me and my family. At my age, the last thing one wants to think about is the possibility of cancer. I'm the youngest of three children and my mother took it particularly badly. Fortunately the results of the biopsy came back negative for cancer, but there was a serious infection, which was eroding the bone and there was a real danger of losing my leg," says De Beer.

"The specialist explained to us that the most effective solution was a bone allograft implant, which would help the diseased bone heal in time. Although the thought of another operation really scared me, the pain was excruciating. I was constantly tired and I had no zest for life left. I would have done anything just to feel better."

Two years of constant pain and uncertainty about what was wrong has come to an end for Nelmari de Beer (24), following the successful implant of a bone allograft.

The bone allograft implant operation was a resounding success, and after six weeks of intermittent hospitalisation, her doctor gave her a clean bill of health. The scar that runs from the top of her femur almost to her knee is a reminder of the operation's success.

Nelmari no longer walks with a limp, and is strengthening her leg daily with exercise. She feels like a new person and looks forward to the day that she and her boyfriend can hit the dance-floor again.

She has larger than life plans that include staying healthy and also to settle down and someday start a family of her own. Nelmari is grateful to the donor whose selfless gift ultimately saved her leg. She was one of the tissue donor recipients who took part in the Pretoria Donor Tribute (03 September 2016) to pay tribute to the donors and honour their families. She realises the value of becoming an organ and tissue donor and how this can change someone's life for the better. (Tissue donation repairs lives; organ donation saves lives).

 
 

Nelmarie de Beer

 
 

Rosina Mentoor

Rosina Mentoor
Cornea Recipient

Back in 2008 when Rosina Mentoor was a young girl in Grade 4, she was diagnosed with Glaucoma in both eyes. At that point in time her right eye was the strongest, and she was fortunate enough to receive a cornea transplant on 28.07.08. The decision was taken by her specialist to delay surgery in her left eye, but to schedule another cornea transplant as soon as one became available.

Unfortunately this did not happen until 2014 when Rosina was in Grade 10. The corrective surgery was unsuccessful and Rosina completely lost the sight in her right eye. She is permanently blind in that eye.

In 2015 Rosina underwent further surgery to have armoured valve tubes inserted in her eye to reduce the pressure in the eye nerve. Her eye must be constantly monitored and at times she is required to take meds to ensure the pressure is maintained at a 'norm'.

Rosina signed up as an organ & tissue donor at the end of January during this year's Pukke Jool (North West University, Potchefstroom). Elize Scheepers, (also an alumni from this University) Coordinator for the Centre for Tissue Engineering launched an awareness campaign during the annual RAG/JOOL festival. With the buy-in from Prof. Fika van Rensburg (Rector) who set an example by registering as a donor, and with whose support further awareness opportunities will take place during the year. Charonike, of Puk FM, will also be involved in spreading the word, and motivating other universities to run similar campaigns where students will be educated and encouraged to register as an organ and tissue donor.

Rosina was motivated by her Mum to register as a donor, and also had the discussion with her brother who is an Anglican Reverend. Both encouraged Rosina to sign up as a donor.

Rosina feels blessed to have received the cornea donation, and is grateful to the donor family for their selfless gift which ultimately saved her vision in her right eye. Realising the value of becoming an organ and tissue donor and how this can change someone's life for the better, Rosina would love to help others in turn and pay it forward by encouraging others to register. "If it helps somebody else in the long run then why not?" she asks.

Rosina is a first year student studying micro-biology and physiology, but can see herself working in a lab some day, ultimately helping others. She would love to study genetics and psychology.

Imagine if Rosina had been in a position to receive another cornea sooner? There is an enormous discrepancy between the numbers of registered donors and patients in need of a transplant in South Africa, and a great deal more education and awareness is needed.

We believe Rosina is a hero who by her example is breaking cultural taboos and boundaries, and motivating more of her peers to register and become heroes!

Read more in this article from Netwerk 24

Zodwa Maseko
Cornea Recipient

Back when Zodwa Maseko was a young girl in Grade II, she was diagnosed with short-sightedness (or myopia) and spectacles were prescribed. Zodwa really didn't enjoy the fact that she had to wear spectacles, and was secretly delighted when her toddler sister broke them! It was only when she attended University to study Journalism and Library Science that she realised that her eyesight wasn't what it should be; and that she couldn't read what was written on the board at the front of the lecture room.

She was fortunately amongst the very first to trial contact lenses which were new on the market, but that was until she contracted eye infections in both eyes. Zodwa later realised that her vision had always been sensitive to dust, light, pollens and so on. What followed next was Radial Keratotomy (RK) Eye Surgery in both eyes, her specialist Dr Percy Amoils. (In the eighties this procedure was once of the most common ways to correct nearsightedness. However with the rise of more effective procedures like LASEK, LASIK and PRK, it is now considered outdated). For a period of some ten years Zodwa enjoyed good vision, but thereafter discovered that she needed reading assistance - as is the norm with the gradual onset of the more mature years. What followed was a number of visits to various specialists, (including Dr Jan Talma at the Pretoria Eye Institute), where Zodwa received surgery and permanent lenses.

After numerous treatments to address the macular degeneration in her left eye, Zodwa was given the news that a cornea transplant would be the very last resort. When this situation eventually arose the problem facing Zodwa was that the cornea would have to be sourced from overseas; as a result of the severe shortage of donor cornea tissue in South Africa. This type of procedure is costly and Zodwa feels extremely fortunate that she is currently a long-term member of an exceptional medical scheme.

Zodwa obtained authorisation from her Medical Scheme for the procedure in January 2016, but only received her cornea transplant on 10 May 2016. Zodwa recalls that the procedure was relatively quick, and that after the overnight recovery period she could clearly make out the chair in the specialist's room once the protective eye cover was removed. Initially Zodwa used steroids as an anti rejection measure, with as many as 6 or 7 different eye drops requiring 2 hourly administration. Nowadays Zodwa uses 3 eye drops twice per day.

Unfortunately, only some six months later saw Zodwa being admitted several times over the December/January period to receive treatment for a fungus that had since developed in her eye between the cornea and the retina. Tests showed that 'sugar' was at the root of the cause. Although Zodwa has a family history of diabetes Type II, she herself has never suffered with the affliction. She is now on diabetic medication to control the sugar levels, and will require another cornea transplant to remedy the loss of vision and heightened light sensitivity.

For the time being she must wear sunglasses constantly.

Zodwa and her family members are all registered as organ donors, and Zodwa uses every available opportunity to educate and create awareness around organ and tissue donation. A topic she herself knew nothing about prior to her cornea transplant.

Zodwa is a fierce advocate for educating her people around their beliefs that the human body must remain intact following death, or face the displeasure of the ancestors. She feels blessed to have received the cornea donation, and is grateful to the donor family for their selfless gift which ultimately saved her vision in her left eye. Realising the value of becoming an organ and tissue donor and how this can change someone's life for the better, Zodwa has enlisted as a volunteer and encourages everyone she knows to register!

It is a tragedy that Zodwa was unable to receive a cornea sooner via a local tissue/eye bank. There is currently an enormous discrepancy between the numbers of registered donors and patients still on the waiting list, and still in dire need of a transplant. A great deal more education and awareness is needed here in South Africa.

We believe Zodwa is a hero who through her volunteer work is breaking through cultural taboos, and educating more of her peers to understand the need for organ and tissue donation, especially when they may someday find themselves in a similar situation, and needing assistance.

Zodwa was also one of the tissue donor recipients who took part in the Pretoria Donor Tribute (03 September 2016) to pay tribute to their donors and honour the donor families. She fully comprehends the value of becoming an organ and tissue donor and how this can change someone's life for the better. (Tissue donation repairs; Organ donation saves lives).

 
 

Zodwa Maseko

Email your story of hope to
info@tissuedonation.org.za