Paediatrician Registrar and mother of 2, Kerryn Neilson (32), from Midrand, Johannesburg has crowdfunded over 1 million rand towards a new chemotheraphy drug to save her life.
Above: Kerryn (32), Sheldon (32) with children, Ashton (4) and Isabella (9)
Whilst in Germany visiting her sister in law, Kerryn discovered large, painless lymph nodes in the cervical, supraclavicular and infraclavicular areas (down the side of the neck and above and below her collarbone). As a medical practioner herself, Kerryn immedinately suspected she might have Cancer.
A lymph node biopsy on the 2 May 2017 on her return to South Africa, confirmed Kerryn’s suspusions and she was diagnosed with T cell acute lymphoblastic leukemia (T-ALL.) T-ALL is a fast-growing blood cancer which creates abnormal lymphocytes (white blood cells formed in the bone marrow)
“Abnormal lymphocytes don’t fight infections very well, and as a result your body keeps on producing more and more of them as its need for them is never satisfied. This results in these abnormal cells crowding the bone marrow, preventing it from making the normal cells that your body needs and making one susceptible to infections The bone marrow is also responsible for creating your red blood cells and platelets, and as a result of this over-crowding those are also not formed. This leads to anaemia and random bleeding” – Says Kerryn
Crying in her physician’s office, Kerryn descibes feeling utter disbelief.
“I was sobbing the whole way through and strangers kept coming up to me to give me hugs and tell me that everything was going to be OK but I couldn’t speak to them because I was still so shocked with the news. I felt fear, like my whole life was being cut short and that I was too young to have this diagnosis; fear that my kids would grow up without me and eventually forget me and how much I loved them. This still terrifies me the most” – says Kerryn
At the age of 5, Kerryn dreamed about being a doctor and has dedicated her life to her profession. She admits to often missing the morning school run or that quality bedtime-story time with her two children Isabella (9) and Ashton (4) as a result of a demanding doctors schedule. Having been diagnosed with cancer, Kerryn has had time to reflect on the unpredictable nature of life.
“I was suddenly faced with the reality that I do not have unlimited time to spend with my family and this has made me reassess my priorities. I’ve had to adjust long term life goals to short term life goals and I had to accept that all the good things that I’d been putting off doing may never happen if I don’t do them now. It has forced me to consider everything about my life and to confront just how much I have to lose.” – says Kerryn.
Husband, Sheldon Neilson (32), has been Kerryn’s pillar of strength through her ordeal. The Childhood sweethearts recently celebrated their 5 wedding annivarsity after being together for nearly 12 years.
“I have known Kerryn since I was 12 years old. We grew up in the same street. She has always been beautiful. Wide-eyed, confident, smart, bubbly, adventurous… she’s been my best friend for as long as I can remember.”- says Sheldon.
With Kerryn, fighting cancer, Sheldon has taken on even more responsibility in the household to ensure Kerryn has the strength to beat her condition.
“My singular focus has been on doing everything possible to support Kerryn through this, whatever that may mean. From admin, bills, medical aid queries, to doing the cooking and cleaning up. In the most part just being available for her and whatever her needs may be in the moment. It makes me feel powerless knowing that however hard I try there is ultimately only so much that I can control but there is no length that I wouldn’t go to to beat this.” – says Sheldon.
Kerryn has spent the greater part of the last few months in hospital, often in isolation, unable to see her children Isabella and Ashton. When she’s home, Kerryn often has no immunity and is very prone to infections. Her children have had to learn to always wear face masks around her and wash their hands before touching her so that she doesn’t get sick.
“Ashton doesn’t really understand what is happening except that I am sick. He misses me a lot when I am away and sometimes I can see that he is anxious as he often asks when I am going back. Isabella has much better understanding of what is wrong with me. She is scared but is coping well despite the circumstances.” – says Kerryn.
To treat her agressive form of cancer, Kerryn’s haematologist suggested that a chemotherapy drug, Nelarabine, was the best option moving forward. Nelarabine is specific for refractory T-cell acute lymphoblastic leukaemia and while it has been approved in America and Europe is not readily availible in South Africa.
“There is no guarantee that this drug will get me into remission, but my doctors feel like it is worth a shot and complete responses have been achieved with this medication in other patients around the world. Right now, there is nothing else that can be offered to me in order to achieve remission and it really is my last hope. If it works, I will be able to have a bone marrow transplant from a donor in the United States who has already been matched for me and this is the only thing that is potentially curative. “ – says Kerryn
Unable to afford the treatment , estimated to cost around R2.5 million rand, Sheldon set up a campaign on donations based crowdfunding platform, BackaBuddy, to appeal to the public to help save his wife.
Kerryn’s campaign went live on 16 January 2018, local and international donors responded generously, rasing over R1 million rand in a few short weeks, enough to order Kerryn’s first round of treatment. One donor, who would like to remain anonomous, contribited a single donation of R200 000 towards the BackaBuddy campaign.
“Initially it felt impossible. It is just such a massive amount. While crowdfunding on BackaBuddy we were also scrambling to come up with contingency plans, to take money out of the bond and our savings and retirement funds etc. Even while the donations were coming in, it just felt like such a big number, yet slowly but surely the fund has continued to creep towards the target.” – says Kerryn
We are reminded of both the resilence and genorosity of the South African people in the face of fear and adversity. The manner in which the crowd responded in Kerryn’s time of need is truely inspiring.Kerryn’s campaign is BackaBuddy’s first medical campaign to raise over one million rand for one individual.
A message from Kerryn to her donors:
“We would like to extend them our deepest thanks to everyone who supported our BackaBuddy crowdfunding campaign! So many have given so much.. We have been humbled by the amount of support that we have received in such a short time. The response has been incredible and everyone’s generosity has been quite overwhelming.”
Donate to Kerryn’s Leukemia Fund here
Donations to date: R 1 175 159.08
Fundraising target: R 2 500 000.00
Number of donors: 443