According to a story from Soweto Urban, mother Lebohang Leuta is no stranger to the challenges that come with raising and taking care of a child with a chronic rare illness. Her son Atlehang was a little over a year old when he was first diagnosed with neurofibromatosis, a rare genetic disorder. The revelation was devastating for Lebohang, who tried to conceal her son from public view and suffered with depression, forcing her parents to temporarily take over caring for Atlehang. However, she soon realized that she would be better off taking action.
Neurofibromatosis is a genetic disorder that has impact on a number of the human body’s functional systems. Neurofibromatosis is caused by a mutation of a gene located on chromosome 17 which is responsible for the production of the protein neurofibromin. This mutation can be heritable, but about half of cases are the result of spontaneous mutation. Symptoms of the disease include epilepsy, tumors affecting the nervous system and skin, spots on the skin, scoliosis and other skeletal deformations, learning and mental impairment, and vision disorders. People with the disorder also have greater risk of cardiovascular disease and cancer compared to unaffected people. The severity of symptoms can vary greatly; some people live fairly typical lives, whereas others are faced with serious quality of life challenges. There is no cure, and treatment generally involves managing serious symptoms and complications as they appear. To learn more about neurofibromatosis, click here.
The Atlehang Foundation
Lebohang founded the Atlehang Foundation, which she named in honor of her son. The mission of the organization is to support parents of children with chronic medical conditions and rare diseases as well as other full time caregivers. Lebohang realized that the support of such an organization would have given her more confidence to do what is necessary for the health of her child more quickly and she hopes for the foundation to provide that role for others.
The group’s first event was held on November 2nd at the Pimville Community Center. She hopes that participants will be able to share stories and support each other and ultimately plans to gain access to a facility where patients and their parents can visit to receive mental health support and other resources.
Check out the Atlehang Foundation Facebook page here.