On Christmas Day in 2021, Rhoda and John Luwemba, from Kampala in Uganda, lost their six-year-old son Seth to a brain tumour. They remember him as a generous, cheerful and friendly boy who loved singing and was an adored youngest sibling to Cynthia, Rodney and Jonez.
Seth’s story
Seth had been diagnosed with craniopharyngioma of the central nervous system in October 2019 and his first two surgeries had gone well. But he died just 24 hours after his third operation to treat the disease.
His dad, John, said: “Despite his challenges, Seth’s spirit remained unbroken. He never focused on his own hardships but sought to help others.
“His signature phrase was “for real?!” and he often flashed out his two victory fingers, even on his sick bed, as attestation that he would fight on.”
Seth’s Dad, John
Though shattered by their loss, Rhoda and John were determined to do something to help others and raise awareness of brain tumours in children.
They also want to offer families affected by cancer something that they hadn’t had – psychosocial support – and help those from less privileged backgrounds to pay their medical expenses.
They set up a charity called Seth Smile in tribute to Seth and set its goal as: “to place a smile on every child’s face – for real!”
What are Seth Smile’s objectives?
With support from The Brain Tumour Charity, Seth Smile promotes early diagnosis, appropriate treatment, and continuous care.
It aims to reduce the rate at which treatment is abandoned in Uganda, to improve patient care and facilitate collaboration and shared learning with key stakeholders and partners.
It also advocates for equal access to qualified oncological, paediatric, surgical, and other health care workers, particularly at the primary care level.
And through fundraising, it aims to:
- Cover all treatment-related costs for families, such as accommodation and transport costs to and from hospital.
- Develop and produce user-friendly resources for caregivers including guidance on the nutritional needs of patients, DIY physiotherapy exercises and information packs.
- Facilitate home visits to patients in hard-to-reach areas.
We have provided Seth Smile with some of our resources and some advice on best practice.
This International Brain Awareness Week, we wish the charity and its community all the best with the challenges they are tackling.