Donor Stories – The Sunflower Fund http://www.sunflowerfund.org.za Tue, 29 Nov 2016 10:20:20 +0000 en-GB hourly 1 We Salute our Unsung Heroes http://www.sunflowerfund.org.za/we-salute-our-unsung-heroes/ http://www.sunflowerfund.org.za/we-salute-our-unsung-heroes/#respond Tue, 09 Aug 2016 11:29:10 +0000 http://www.sunflowerfund.org.za/newsite/?p=3488 On behalf of all patients past, present and future, The Sunflower Fund dedicates this page to the unsung heroes – without them there would be no […]

The post We Salute our Unsung Heroes appeared first on The Sunflower Fund.

]]>
sambrOn behalf of all patients past, present and future, The Sunflower Fund dedicates this page to the unsung heroes – without them there would be no hope – YOU HAVE MADE THE DIFFERENCE and we salute you. Hope begins with you.

Special thanks and recognition must also go to the South African Bone Marrow Registry (SABMR), a national organization with the responsibility to process requests for haematopoietic stem cells (HSC) from unrelated donors emanating locally and from abroad – without their specialist expertise none of this would be possible.

The SABMR is a member of the World Marrow Donor Association (WMDA) and has been designated the National HUB centre for Africa, through which incoming and outgoing requests for donors are channelled.

The South African gene pool is unique and thus extremely valuable to the rest of the World.  The SABMR is regularly approached to provide donors for African and Asian patients and patients of mixed ethnic origin. All blood stem cell donations from South African volunteers, however, take place at one of the specialised centres in South Africa and are hand carried by a personal courier to the patient’s transplant centre. For more info on the SABMR click here.

In compliance with international agreement, strict anonymity is maintained between donor and patient.

The Sunflower Fund recruits donors for the SABMR.  To register as a donor call: 0800-12-10-82

The post We Salute our Unsung Heroes appeared first on The Sunflower Fund.

]]>
http://www.sunflowerfund.org.za/we-salute-our-unsung-heroes/feed/ 0
Thanking a donor for the gift of life http://www.sunflowerfund.org.za/thanking-a-donor-for-the-gift-of-life/ http://www.sunflowerfund.org.za/thanking-a-donor-for-the-gift-of-life/#respond Wed, 15 Jun 2016 10:59:35 +0000 http://www.sunflowerfund.org.za/?p=5460 How do you thank someone for saving your life? This is the question that Vivian de Klerk recently found herself answering, as she had the opportunity […]

The post Thanking a donor for the gift of life appeared first on The Sunflower Fund.

]]>

How do you thank someone for saving your life? This is the question that Vivian de Klerk recently found herself answering, as she had the opportunity to send a letter to a young German woman who had selflessly donated stem cells to make Vivian’s stem cell transplant possible.

Vivian was diagnosed with paroxysmal nocturnal haemoglobinuria (PNH), a rare disorder in which red blood cells break apart prematurely, and she was in dire need of a stem cell transplant. As this was unfolding, a world away in Germany, Linda Weigand’s mother received a letter from DKMS – the German Bone Marrow Donor Centre, asking whether anyone in her family would consider joining the German Bone Marrow Registry, as they had unusual genetic characteristics. Linda, who was 19 years old at the time, immediately registered and within three months, received a call to say that she was a possible match for a woman in South Africa.

thanking-a-donor-for-the-gift-of-life-02

“They wanted to know if I was ready to make a stem cell donation,” says Linda. “I didn’t even have to think about it and, of course, my answer was YES.” She submitted additional blood samples for in-depth testing and soon received a response confirming that she was a match for this patient!

After a thorough medical check-up, Linda prepared for the donation process by undergoing regular injections to stimulate the growth of new stem cells.

In the meantime, Vivian was prepared for her transplant and the lifesaving ‘stem cells’ landed in Cape Town early in 2011. Vivian had the transplant the same day, and doctors were amazed at how quickly she recovered. Within eight days, Vivian was discharged from the hospital, and was soon back at work as a radio operator in the South African Air Force. Just a year after her transplant, Vivian hiked the 98-kilometre Fish River Canyon trail in Namibia and as a Cape Town resident, is a regular on the trails in the Table Mountain National Park.

In 2015, she was a member of the South African Transplant Team that participated in Argentina at the World Transplant Games, and won six medals. “All of this achievement wouldn’t have been possible, if it wasn’t for your selfless gift,” she says to Linda.

In turn, Linda is as pleased to have connected with Vivian, “It is such a good feeling to know who you are! It makes me unbelievably happy that I know who my genetic twin is!”

The post Thanking a donor for the gift of life appeared first on The Sunflower Fund.

]]>
http://www.sunflowerfund.org.za/thanking-a-donor-for-the-gift-of-life/feed/ 0
Donor Story – Carey Symons http://www.sunflowerfund.org.za/donor-story-carey-symons/ http://www.sunflowerfund.org.za/donor-story-carey-symons/#respond Sun, 09 Aug 2015 11:53:13 +0000 http://www.sunflowerfund.org.za/newsite/?p=3514 I went to donate blood in the little village where we lived and on this particular day Round Table were doing a “sign up to be […]

The post Donor Story – Carey Symons appeared first on The Sunflower Fund.

]]>
carey-symonsI went to donate blood in the little village where we lived and on this particular day Round Table were doing a “sign up to be a bone marrow donor” drive and I immediately signed up.

It was about 10 years later that I received a phone call to say I was a possible match for a patient needing a bone marrow stem cell transplant.  I remember getting goose bumps over my body!  I was so excited I couldn’t believe that after all these years I’d finally received a call from the SA Bone Marrow Registry.  I was asked to go to a clinic to give blood samples to start the “investigation”. The clinic staff were so professional and always had my best interests at heart and I must say, the blood tests were not painful at all. The adrenalin pumped through my body and I was prepared to do whatever they asked.  I secretly begged God to make me that perfect match. Each week I received a phone call telling me that I was still a possible match.  Each time meant I was getting closer and I told everyone what I was up to!

The process took a few months as it is an incredibly exact and expensive process to find a match. It eventually got to a point where I was a perfect match, God is so faithful.  I had to go for a final medical; all the costs were covered by the South African Bone Marrow Registry. I had X-rays and a medical examination. The doctor explained the procedure to me and it sounded organised and simple.

I had a choice as to where I wanted to donate the bone marrow stem cells and I chose Constantiaberg Hospital in Cape Town (because I love Cape Town). I was asked to take someone with me, so I took my mom.

Our tickets were booked and before we knew it we were off to Cape Town!  We were met at the airport by a courier from a fancy B&B that they had booked us into (all expenses paid). He took us to our B& B and as an added bonus; a little hired car was waiting for us there.

The most wonderful part of this process was how well organized it was. Never did we have to wonder what was happening next or what we had to do, it seemed that all the people involved had been so well rehearsed.

We arrived about 4 days before the procedure because I had to go to the hospital every morning to have a growth factor (G-CSF) injection, which were also painless.  The growth factor injections first increase production of stem cells in the bone marrow and secondly, release these stem cells into the bloodstream – clever doctors!  Anyway, each morning I arrived at the hospital to be greeted as if I were an angel and have my bloods checked just to see that the bone marrow stem cell count had increased and then have my daily injection.

It took a few days and finally I was admitted to the ward. It was difficult for me to see what Cancer patients go through, especially those who were so young. I spent as much time as possible visiting the children.

I couldn’t wait for the morning so I could get started with the harvest process, which is actually very similar to donating platelets.  Blood is drawn from one arm through a needle and filtered through a cell separator machine, bone marrow stem cells are collected from your blood into a bag.  The rest of your blood is returned via a needle in your other arm. This process usually takes +/- 4-6 hours and might need to be done on two consecutive days.  However in my case, after being checked by the doctor a decision was made to insert the needle and tube into my femoral vein and the others were removed from my arms.   I could eat, read and use my arms as I needed. I slept well after visiting my little friends who weren’t as happy as I was and it did remind of the purpose behind what I was doing.

My job was done!  When I reached my room, there was a lady standing at my door holding a small cooler box and she said “I’ve come to thank you for saving my patients life, in this little box is your life saving bone marrow stem cells.” Before I could say a word she waved saying “I’ve got a plane to catch – goodbye”.

It has been 5 years since that awesome day. I get a Christmas card every December and a phone call on every anniversary and the good news that “my friend” is alive well and happy! I wish I could do it again but you can only be a donor once in your life.  I pray that my story inspires someone else to be brave enough to save a life, it is truly life changing.

The post Donor Story – Carey Symons appeared first on The Sunflower Fund.

]]>
http://www.sunflowerfund.org.za/donor-story-carey-symons/feed/ 0
Why I became a donor http://www.sunflowerfund.org.za/why-i-became-a-donor-written-by-brian-gray/ http://www.sunflowerfund.org.za/why-i-became-a-donor-written-by-brian-gray/#respond Sun, 09 Aug 2015 11:47:24 +0000 http://www.sunflowerfund.org.za/newsite/?p=3505 Written by Brian Gray My decision and motivation to become a stem cell donor has a very personal background. My daughter Logan was diagnosed with leukaemia […]

The post Why I became a donor appeared first on The Sunflower Fund.

]]>
Written by Brian Gray

gray-family

My decision and motivation to become a stem cell donor has a very personal background.

My daughter Logan was diagnosed with leukaemia when she was only three years old. While it was a shock and is something that we will live with always, it opened mine and my family’s eyes to the realities of what others in a similar or much worse situation than ours are going through. A world that one may not ordinarily be aware of or that we choose to pretend does not exist.

We quickly learnt that there is a huge need for more stem cell donors here in South Africa and how badly the odds are stacked against someone waiting for a suitable donor, those being 1:100 000. We have had first-hand experience of patients that tragically have not beaten these odds.

We registered and joined the SA Bone Marrow Registry (SABMR) through The Sunflower Fund through an organised donor drive. This was an easy decision and commitment to make, especially due to the position we were in and in the hope that we would be a match for someone and in some way give back after the wonderful treatment, love and support that my daughter has and continues to receive.

I received the call from the SABMR soon afterwards to undergo further testing and after an agonising wait, I was informed I was a match for someone. There were a number of medical checks and physicals to undertake before the big date and it was during this time that I started to realise the responsibility that someone in my position has.

In the week leading up to the donation, I had to have a series of growth factor hormone (G–CSF) injections at the hospital which involved some travelling and early starts in the morning and after work, but this is really not a big deal when dealing with something so significant, and in a way, just seemed to make it more meaningful. These hormones increase the production of stem cells in the bone marrow. These excess stem cells move into the blood stream and from there are collected via a cell separator machine, much like donating platelets or a blood transfusion. There was no cost involved for me at all.

After donating, all one can do is hope that the recipient’s transplant went well and you have given someone a chance at life.  I feel really grateful to have been able to do this and all I can say to anyone considering joining the registry is DO IT NOW – it is a commitment, but that commitment is what makes it all the more rewarding.

The post Why I became a donor appeared first on The Sunflower Fund.

]]>
http://www.sunflowerfund.org.za/why-i-became-a-donor-written-by-brian-gray/feed/ 0
Be the Match http://www.sunflowerfund.org.za/be-the-match/ http://www.sunflowerfund.org.za/be-the-match/#respond Sun, 09 Aug 2015 11:37:29 +0000 http://www.sunflowerfund.org.za/newsite/?p=3493 I cannot describe how I feel at the moment: elated, fear, apprehension, hope? A patient needs a bone marrow stem cell transplant, and I am a […]

The post Be the Match appeared first on The Sunflower Fund.

]]>
ann-nossekI cannot describe how I feel at the moment: elated, fear, apprehension, hope?

A patient needs a bone marrow stem cell transplant, and I am a match for that person.  I don’t know that person, and I never will.

In 2003, I added my name to the South African Bone Marrow Registry (SABMR). At the time, The Sunflower Fund was appealing to the public to assist them by becoming bone marrow stem cell donors to save the lives of patients suffering from leukaemia and other life threatening blood disorders.

Unfortunately the chances of finding a match from someone, who is unrelated to the patient, are very slim, 1:100 000.

In 2010, I was contacted by the SABMR and asked to go for further blood tests. I was so surprised, but not very confident that I would be a match for someone. After many more tests, I was told that I was the one! I was found to be a match for a patient who needed a miracle.  It took quite some time to sink in!

There were so many thoughts going through my mind.

Is it really me?
Will it be painful?
Will I feel ill?
Who is the person?
How will I feel if that person dies?

I was wondering how my family would feel about it, as at that stage I had not shared the experience with many people. I began reading a lot more about what can be expected and spoken to a few more people. Can I go through with this?  YES I CAN. I have given my commitment and will go ahead with the stem cell donation.
The recipient was a young patient from Pretoria. This was a miracle for the family who were desperate to find a donor for their loved one and they knew that without a lifesaving donor the odds for survival were slim.

3 weeks later:
It’s done! The harvest of stem cells itself took 2 days and there was very little discomfort. The staff at SABMR and the UCT private academic hospital were fantastic. My bone marrow stem cells were flown to Pretoria that same evening to be transplanted into the patient. Afterwards, I felt very emotional and so elated, to think that I was the only 1 to be the match!  I felt as if I was the chosen one! All I had to do was share a little and I saved a life!

If I had the opportunity, I would certainly do it again.

The Sunflower Fund educates and recruits bone marrow stem cell donors onto the SABMR, representative of all ethnic groups, in order to save the lives of patients suffering from leukaemia and other life threatening blood disorders. All it takes to register to become a bone marrow stem cell donor is a call to The Sunflower Fund toll free number 0800 12 10 82 and 2 test tubes of blood.

Help The Sunflower Fund, build a state asset that will protect future generations and give hope to current patients who need a lifesaving donor and to be given the opportunity to a longer and healthier life. Wouldn’t you like to know that if someday someone close to you were diagnosed with leukaemia that there was a matching donor to save their life?

Share a Little, Save a Life.

The post Be the Match appeared first on The Sunflower Fund.

]]>
http://www.sunflowerfund.org.za/be-the-match/feed/ 0
Brenda’s Story http://www.sunflowerfund.org.za/brendas-story/ http://www.sunflowerfund.org.za/brendas-story/#respond Sun, 09 Aug 2015 11:26:29 +0000 http://www.sunflowerfund.org.za/newsite/?p=3484 “It was peer pressure” said Brenda Masuku, a resident of Johannesburg, explaining how she became listed in the South African Bone Marrow Registry in 1999.  “A […]

The post Brenda’s Story appeared first on The Sunflower Fund.

]]>
brenda-masuku“It was peer pressure” said Brenda Masuku, a resident of Johannesburg, explaining how she became listed in the South African Bone Marrow Registry in 1999.  “A couple of my friends at work were going to participate in a bone marrow drive for a South African boy who had leukaemia and they urged me to join them”

Brenda, a call centre agent for a large insurance company, was 23 years old when she donated.  She is delighted that something done on a whim has resulted in a personal satisfaction she could never have imagined.
The youngest of eight children from a village in Mpumalanga, South Africa, she is the only member of her family who has ever donated blood and she is the first black South African to  become an unrelated stem cell donor.  “It is not typical of black South African culture to donate blood, let alone do something like become a stem cell donor”, says Brenda.

The HLA typings of all SABMR donors are listed on a worldwide database called Bone Marrow Donors Worldwide.  It was this search tool that was used by the transplant co-ordinators in the USA to identify a potential donor in South Africa.

The fact that Brenda donated stem cells for a young girl in Lancaster, California, is all the more extraordinary because of several obstacles that could have prevented the donation from ever occurring.

Following her registration, Brenda changed jobs and cell phone numbers.  The contact numbers the registry had were no longer valid.  On a whim, and serendipitously, Brenda telephoned her previous boss.  “We had a good relationship, but had not remained in contact.  One day, I decided to pick up the phone and make a greeting.  I was surprised to learn from him that the bone marrow registry was attempting to locate me.  If I had not called, they would have never reached me.”  Brenda contacted the registry and confirmed her willingness to participate, but it would be some time before the recipient required a bone marrow transplant.

The SABMR responded to the preliminary search request on 6 September 2000.  On 7 September 2000, further testing was requested by the USA Transplant Centre, and this was completed in 12 days – well within expected time frame of 21 days.  Samples for mandatory confirmatory typing in line with international norms, were requested for shipment to the USA on 20 September 2000 and were shipped within 3 days.  On 18 October 2000, the SABMR was informed that Brenda was the donor of choice.  The patient was at that time in remission and the SABMR was asked to keep Brenda “on hold”.

For more than two years, there was no news from the USA, other than to confirm that the patient was doing well and continued requests to “please keep the donor on hold”.

In March 2003, the SABMR was asked to establish Brenda’s availability as ‘her’ patient had relapsed and urgently needed a bone marrow transplant.  By this time there was another obstacle to manage.  Brenda had given birth to a daughter six months earlier.  Fortunately for the patient, the medical opinion was that Brenda had recovered sufficiently to donate stem cells.

Finally, on 26 May 2003, Brenda became the first black South African to donate stem cells to an unrelated patient.  Brenda was supported during her donation by her partner, Raymond.

The donor-companion plays a very important role in ensuring the donor is comfortable during the donation.  The donor-companion accompanies the donor to the collection facility to provide moral and, sometimes, physical support.

“It was a big deal because it was the first stem cell donation performed at that clinic in Johannesburg and the staff was so excited” says Brenda.  And while she admits she was nervous, she says the procedure was very easy.

In 2004, the SABMR was asked by the City of Hope Hospital in the USA, to convey to Brenda an invitation to attend their “Celebration of Life” meeting.  At this meeting, Brenda would come face-to-face with the patient.

The SABMR policy on donor-recipient contact has since been reviewed.  In line with international trends donor – recipient contact is no longer permitted.  The main reasons being concern that donors may be pressurised into providing additional stem cell products as well as the emotional aspects such as morbid attachment or coming to terms with the death of the patient.

Brenda was delighted to accept the invitation.  The trip was her first trip out of South Africa.  It was an extraordinary journey for a young woman who simply followed through on a whim. “You never know how your actions will come back to you” she said, with joyful disbelief.

“I hope that my experience inspires other South Africans to become donors. I feel a deeper sense of achievement in my life as a result of a quick decision made one afternoon.”

The post Brenda’s Story appeared first on The Sunflower Fund.

]]>
http://www.sunflowerfund.org.za/brendas-story/feed/ 0
2 donors donate for 2 different patients on the same day! http://www.sunflowerfund.org.za/2-donors-donate-for-2-different-patients-on-the-same-day/ http://www.sunflowerfund.org.za/2-donors-donate-for-2-different-patients-on-the-same-day/#respond Sun, 09 Aug 2015 11:21:57 +0000 http://www.sunflowerfund.org.za/newsite/?p=3478 Madelein Schultz-Du Toit I registered as a Bone Marrow Donor in 2006.  Before that I participated in 2 shav-athons and felt that I didn’t have anything […]

The post 2 donors donate for 2 different patients on the same day! appeared first on The Sunflower Fund.

]]>
madelein-schultz-du-toit

Madelein Schultz-Du Toit

I registered as a Bone Marrow Donor in 2006.  Before that I participated in 2 shav-athons and felt that I didn’t have anything to lose and that I could only help someone else if I register.
We sometimes forget how privileged we are to have good health.

In November 2008 I was contacted by the South African Bone Marrow Registry because I was identified as a possible donor. This was very exciting news for me, because I thought I could give someone a BIG Christmas present should I be found to be a match. However, this did not work, but was I contacted shortly thereafter to say that I was a match.
I felt so unbelievably privileged when I walked into the haematology ward for my first donation. I was able to lengthen someone’s life. WOW!!!  What would you give to have that opportunity? The procedure itself is similar to donating blood, but it takes longer.

As I look back, I have no doubt in my mind that I would do it again.  The more you give, the more you want to give.  Why keep it all to yourself?
This is one of the ways you can thank God for what He has given us. Don’t think, just do!!

And to the recipients – don’t lose faith!
cindy-le-roux

Cindy Le Roux

“Om sonder hoop te leef is dieselfde as om op te hou leef.”

For some people it is this quote from Alexandre Dumas that carries them through dark times when their bodies are weak and all that remains is that small hope that someone will give them the chance to a new life.

It was an honour for me to be the 47th person on the South African Bone Marrow Registry to donate stem cells. This miracle takes hold of your life and changes it for the better. The feeling of giving light in someone else’s life is wonderful. The process asks so little of you and yet it can change someone’s life miraculously.

I honestly never thought I would be contacted, but when that important phone call came, I experienced emotions of fear, excitement and disbelief. All the months of testing and preparation to determine whether you are an exact genetic match to that specific patient, became a time when I myself started hoping for something miraculous and started realizing that miracles do still happen.

Your decision can make a miracle happen in the life of a terminally ill patient that is anxiously awaiting someone who can bring hope in their lives.  Don’t wait! Make the decision that can help another person today, because tomorrow might be too late.

The post 2 donors donate for 2 different patients on the same day! appeared first on The Sunflower Fund.

]]>
http://www.sunflowerfund.org.za/2-donors-donate-for-2-different-patients-on-the-same-day/feed/ 0