Jermaron fights daily to keep his life
A young boy suffers from severe uncontrolled seizures, right hemisphere brain damage, cerebral palsy and a mild intellectual disability.
Jermaron, a young child from the heart of Florida, suffers from a rare disorder called Dellaman’s syndrome, as well as multiple other disorders.
Jermaron Darries was born with a disease called Oculocerebrocutanceous (OCC) syndrome, which is also known as Dellaman’s syndrome. This syndrome affects one in 200 million individuals worldwide. The prevalence in South Africa is not known.According to Jermaron’s mother, Deidre, he also suffers from severe uncontrolled seizures, right hemisphere brain damage, cerebral palsy and a mild intellectual disability. “He is the survivor of an in-utero stroke, recurring tumours and sight only in one eye. He visits the doctor every three months, but there is no case management or one allocated specialist or doctor at the state hospital,” she said.
Deidre added that apart from the medication prescriptions that are inconsistent, he is being victimised by the community as well.
“Jermaron lives with me. I am a single mom with three other children under the age of 15 years. They have to help me shoulder the responsibility of taking care of Jermaron. I am neglecting them in the process,” Deidre said.
“Besides having to deal daily with recurrent seizures, threats of recurring tumours and dealing with a 16-year-old who has the mental capacity of a seven-/ eight-year-old, providing food and having to work, I am constantly trying to fight a system that is not supportive of his unique health care needs,” said Deidre.
“I am not able to afford medical aid and as a result he attends Chris Hani Baragwanath Hospital, but due to the constant rotation of doctors there is no consistent care for him, which leads to poor management of his epilepsy. He has poor access to much-needed neurological scans and even when a small non-government organisation such as Care4u2 tried to assist there were long delays and a waiting list from the private sector.
Care4u2 approached the Department of Social Development requesting social work intervention because he needs specialised after-care, but even though they sent a social worker out to assess his needs, nothing fruitful came from it. I have being reaching out to numerous organisations and companies such as Carte Blanche, Doctors without Borders, newspapers and radio stations, but nothing has come from these efforts either.
“According to Deidre, due to Jermaron’s seizures and frequent admissions to hospital, her previous employer bullied her into resigning and as a result, she was evicted from her flat and had to seek a place of shelter for herself and her children with a neighbour.
“By the grace of God, I am now employed for six months, but I am barely surviving having to pay rent for the flatlet I managed to secure. Besides that, it is a daily challenge to keep my family fed and clothed,” she said.
On 31 January, Jermaron was rushed to hospital after he suffered six consecutive seizures. “He also has a broken clavicle as a result of a fall during a seizure. His condition requires me to be at home. This affects my work performance.
“But, Deidre said this is just the tip of the iceberg. “I am drained, unsupported and barely keeping my wits together while also witnessing my son’s health deteriorate. “I shared Jermaron’s story with two popular magazines on 27 May last year. The current health system does not fit him and that is why everyone is finding it hard to support him. His multiple disabilities and behavioural challenges also make him a target in his community,” said Deidre.
If anyone can assist Deidre and her family, please email her at jermaronsjigsaw@gmail.com.
According to the American National Organization for Rare Disorders, Oculocerebrocutaneous (OCC) syndrome is a rare genetic disorder and is apparent at birth (congenital). The disorder is characterised primarily by eye (ocular), brain (cerebral), and skin (cutaneous) malformations. For example, many affected infants have semisolid or fluid-filled swellings (cysts) within the cavities of the skull (orbits) that accommodate the eyeballs and associated structures.
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