When Jan-Herman Els, a young athlete and swimmer with Down Syndrome, underwent a successful liver transplant, it raised important questions for healthcare professionals, families and society about how people with intellectual or physical disabilities should be considered when decisions about complex and life-saving healthcare are made.
After her son’s transplant and subsequent almost 100-day stay in the Transplant ICU, Izelle Els launched Fight Till the End: Be Brave, a national awareness initiative aimed at drawing 2 500 new organ donor registrations in South Africa as the family was made acutely aware of the critical shortage of donor organs in this country.
The months of watching monitors, waiting for answers, holding on to hope, and wondering whether the organ he desperately needed would become available in time, were rewarded when he eventually received his liver transplant at the Wits Donald Gordon Medical Centre before spending more than three months in recovery in TICU afterwards.
His mother said the young man’s personal motto has long been: fight till the end. But during those long in TICU, the words took on an entirely different meaning.
The initiative launched by Izelle Els will culminate – on 9 October, in Down Syndrome Awareness Month – in an event in Pretoria that brings together the transplant, organ donation, disability, medical, sport, faith and music communities.
The campaign plans to create an opportunity for a broader South African conversation around:
- organ availability and transplantation;
- informed organ donor registration;
- family conversations about donation,
- disability and dignity;
- equitable consideration for complex healthcare;
- life after transplantation; and
- the experiences of transplant recipients and their families.
The free event, being held at 3Ci Auditorium in Zwavelpoort (guests have to reserve tickets in advance) is supported by and associated with organisations that include the Organ Donor Foundation, Wits Donald Gordon Medical Centre, Discovery Health, South African Transplant Sports Association and Club 21 Learning Centre.
For more information visit: www.fighttilltheend.co.za
Find out more
The full story of the campaign, the event, its sponsors and partners, event registration, and the organ‐donor call to action can be viewed at: www.fighttilltheend.co.za
South Africans can register directly on the website as organ donors. The goal is 2 500 donor registrations.
See more from MedicalBrief archives:
South Africans urged to register as organ donors as demand rises
State launches organ donation awareness campaign
The complex reasons behind SA’s organ donor shortage