Diagnosis turns family’s world upside down
Imagine giving birth to a healthy bouncing baby only to be told after few months that the baby has few years to live.
The Pillay family of Klippoortjie is cherishing every moment spent with their 13-year-old son, Travis, who doctors said would only survive to the age of three.
This comes after he was diagnosed with Batten disease in 2008, which is a very rare genetic disorder that affects the brain and nervous system. The disease causes the nervous system to steadily decline, causing a wide variety of neurologic problems, including loss of vision and seizures.
Amid the challenges of caring for a special-needs child, the family remains positive.
Sharing his son’s heart-breaking story, his father Vinesh said Travis was born a healthy child but after three weeks he and his wife became concerned when he didn’t want to drink milk.
“We consulted various doctors to find out what could be the problem, but they couldn’t find anything wrong until he was six months old. That is when a doctor picked up meningitis.
“Because it was detected early, he was treated and recovered well. A few months later, Travis developed epilepsy, which resulted in him being in and out of the hospital. We then decided to take him to Unitas Hospital where they ran tests, which were sent to Australia.
“After a few weeks, the tests came back and we were told that he had Batten disease, which is incurable.”
Travis’s mother Charmaine said the news devastated her.
“The thought that I won’t be able to see my child go to school because he wouldn’t be able to walk or talk, broke me. As a mother, I knew I needed to be there for him but I was shattered.
“Doctors told us he will live for three years but through God’s grace, he is 13 years old this year. He is a miracle baby and I thank God every day for him.
“Whenever we visit the doctor, he asks us what we give him because he didn’t anticipate that he will reach his teenage years.”
The 48-year-old mother said she believes Travis is alive today because of the unconditional love they have for him.
She added that love is the most fundamental foundation for children with special needs.
Vinesh said it takes a real man to meet the responsibilities of a child with special needs.
“Other men would’ve run away due to the huge responsibility but I chose to stay. Despite the doctors telling us that his condition is incurable I will not give up on him.
“I will continue looking after him till the end.”
Financial constraints
Vinesh (51), who lost his job last year due to the pandemic, said they are struggling to make ends meet.
“As Travis is a special-needs child, he eats nutritious foods, which are quite expensive. We liquidise and blend his food because he is fed through a tube.
“We are surviving on his disability grant but it’s not enough. His chronic mediation costs around R2 000 and we still have to buy adult nappies, which are expensive.
“Besides his expensive nutritious food, we need a suction machine and a new nebuliser to clear his lungs.
“We are appealing to the public, including organisations, to assist with any form of help to continue looking after Travis,” he said.
If you can help, contact the family on 071 355 8543.
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