Brave journey of young fighter living with neurofibromatosis
Mahlatse Marema’s journey with neurofibromatosis has brought many challenges, but with the support of his family, medical team and community, he continues to face each day with courage and hope.
A community-wide fundraising campaign was launched to support Mahlatse Marema, a teenager from Dan Tloome who is courageously living with neurofibromatosis and continuing his long journey towards recovery.
The campaign, led by the Marema family in partnership with the Mogale City Business Committee NPC (MCBC NPC), is appealing to residents, businesses and organisations for assistance with donations to help ease the financial burden of Mahlatse’s ongoing medical treatment and rehabilitation.
Neurofibromatosis is a group of three genetic disorders that cause tumours to grow on nerves anywhere in the nervous system, including the brain, spinal cord, and skin.
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A journey filled with challenges
Mahlatse’s journey has included years of hospital visits, specialist consultations and life-changing surgeries. Despite the challenges he has faced, he remains determined to overcome his condition.
“There have been difficult moments, but I have never given up hope. I am grateful for my family, doctors, sponsors and everyone who has stood by me,” Mahlatse said.
The condition has affected many areas of his life, including his confidence and ability to fully participate in school and everyday activities.
“There have been times when I experienced pain and discomfort doing things many people take for granted. Even so, I continue to face each day with courage, believing my situation will continue to improve,” he said.
Hope through medical treatment
According to the fundraising campaign, Mahlatse required specialised medical intervention earlier this year. In August last year, MCBC NPC accepted his case and partnered with Netcare to help secure the treatment he needed.
Since then, Mahlatse has undergone two successful major surgeries at Netcare Sunninghill Hospital, performed by Professor Christofides. While the surgeries have brought renewed hope, his recovery remains ongoing and requires continuous specialist follow-ups, rehabilitation and medical support.
“The surgeries and recovery process have been the most difficult part,” Mahlatse explained. “There were moments when I felt scared and exhausted because I didn’t know what lay ahead. Being away from home for treatment was not easy, but I trusted the doctors caring for me.”
He credits his family and faith for helping him remain strong.
“My family gives me strength every day. Their love and encouragement remind me that I am not alone. Most importantly, my faith in God gives me hope and courage to keep fighting.”
A family’s strength and faith
For Mahlatse’s mother, receiving her son’s diagnosis was one of the most heartbreaking moments of their lives.
“We noticed changes in his health and physical appearance when he was young. After several consultations and specialist examinations, we learned he had neurofibromatosis,” she said.
“It was devastating because we knew very little about the condition and understood that our child would face many challenges.”
She said the family has faced significant emotional and financial pressure over the years.
“It has been painful watching our child undergo multiple medical procedures. Travelling to appointments, taking time off work and paying for expenses not covered by treatment have placed enormous pressure on our family.”
Although Mahlatse’s surgeries were made possible through the generosity of sponsors and partners, many daily expenses remain the responsibility of the family.
Community called to support
The campaign aims to raise funds for transport to and from medical appointments, follow-up consultations, groceries and nutritional support, medication, rehabilitation, medical expenses not covered by treatment programmes, and general household support during Mahlatse’s recovery.
The family is also appealing for donations of groceries, clothing, toiletries and other household essentials, while counselling and educational support remain important needs.
“We sincerely thank everyone who has already supported Mahlatse,” his mother said.
“Your kindness has given our child hope and access to life-changing medical care. To everyone considering helping, we ask that you continue to stand with us. Every financial donation, grocery parcel, essential item or prayer makes a real difference.”
The campaign also encourages community members to support Mahlatse by sharing the fundraising appeal, assisting with transport where possible, and encouraging businesses and organisations to become partners in his recovery.
Looking ahead, Mahlatse hopes to continue his education, build a successful career and inspire others facing similar medical challenges.
“My greatest dream is to live a healthy and normal life without the limitations caused by my condition. I also want to encourage other young people never to lose hope because with faith, determination and support, anything is possible.”
How you can help
The Marema family and MCBC NPC are appealing for:
• financial donations
• groceries and nutritional support
• clothing and toiletries
• assistance with transport to medical appointments
• sharing the campaign with friends, family and businesses
For more information or to offer support, contact family representative Mamello on 070 663 8532 or MCBC NPC representative Collen Tshegang on 071 948 5779.
No contribution is too small. Every donation helps Mahlatse move one step closer to a healthier future.
