Joshua Naicker is a playful toddler who rewards affection with a beautiful smile. But behind the smile is a little boy battling a debilitating disease.
He was born premature at 33 weeks, with a 45cm head circumference and a skull filled with fluid.
His parents, Phillecia and Bradley, were told five months into the pregnancy their baby had hydrocephalus, also commonly known as water on the brain.
With this condition, cerebrospinal fluid, a clear fluid that surrounds the brain and spinal cord, builds up in the skull and causes the brain to swell.
Phillecia said the days that followed the diagnosis were overwhelming. At 10 days old, Joshua had his first brain surgery and he spent his first two months in a neonatal intensive care unit.
“The doctors did not expect him to survive, he was on a ventilator, he started having seizures and his brain was haemorrhaging,” said Phillecia.
Joshua has had five operations, three of which were brain surgeries.
Dr Robert Crookes, medical director of Cryo-Save South Africa, said hydrocephalus was one of the most common congenital conditions in children, affecting one in 500 to 1000 births. “It can cause problems with the development of a child’s brain, and without treatment, hydrocephalus can be deadly,” he said.
Phillecia said that as a result of the disease Joshua had developed serious conditions such as cerebral palsy (hemiplegia), severe cortical visual impairment, hip dysplasia, epilepsy, chiari malformation, scoliosis, a missing septum pellucidum, global developmental delay and hypertonia.
He needs continuous care because he cannot perform tasks such as sitting, playing, eating or drinking.
To help his condition he needs an occupational therapist, physiotherapist, speech therapist, and a vision therapist.
Joshua has had surgery to implant a catheter which drains spinal fluid from his brain ventricles to his abdomen where it is absorbed.
“However, the other conditions he has developed as a result of brain damage from his condition, can only be addressed with stem-cell treatment that is not offered in South Africa. It is only offered at Duke University in America,” said Phillecia.
The couple’s hopes were stymied when they discovered that the university used the child’s own stem cells from the umbilical cord, as long as it was banked. Joshua’s were not banked. But stem cells from a sibling’s cord can also be used.
When Joshua turned one, they discovered they were expecting their second child. “This unplanned blessing made us scared but so happy and positive about the prospect of using the baby’s stem cells for Joshua,” said Phillecia.
The stem-cell treatment could inprove his quality of life, although it was not necessarily a cure for his condition, Crookes said.
Joshua needs the stem-cell treatment before he turns two on June 20, and his parents need to raise R400 000 to make this happen.
“From the time he was born we have done our best to manage this extremely difficult situation on our own, but the financial toll is huge. In response, we have started a fund for Joshua and are appealing for donations,” Phillecia said.
To donate money to help Joshua, see https://www.backabuddy.co.za/charity/profile/joshua-treatment.