When Allucio from KwaZulu Natal was just five months old, he was diagnosed with West syndrome epilepsy – a condition that can delay a child’s cognitive and physical development.
His mother, Linda Joseph, tells YOU about the challenges of raising her four-year-old son.
Here she shares her story:
“In April 2015 I found out I was pregnant and was so excited that my husband and I were going to be parents.
Throughout my pregnancy, I felt like throwing up all the time, but all my checkups were smooth sailing.
Everything was going well, it was just the baby’s weight that was low, which was concerning. On 23 October 2015 I went to RK Khans hospital in Westcliff, Durban, for a checkup because the baby’s movements were slow. The gynaecologist performed a scan, and everything was fine. The doctors left me on a machine to monitor the baby’s heart rate but after a few hours his heart rate wasn’t reading right, so they rushed me to the theatre.
Allucio was delivered through a Caesarean section. Due to fetal distress, his birth weight was 1,3kg. All the necessary tests were done, and he was born a normal, healthy baby.
For more than a week after his birth, Allucio was in ICU. Later he was placed in the nursery because he had jaundice, which was treated with ultraviolet lights. After a while, he was sent to the kangaroo mother care ward where I had to place him on my chest for skin contact.
When he weighed just more than 1,7kg, he was discharged on 25 November 2015.
In March 2016, my husband and I noticed that Allucio had a “strange cry” – his body jerked and his eyes were watery, so we decided to take him back to hospital where they treated him and told us it could be epilepsy.
We were then given a letter to take Allucio to KwaZulu-Natal Children’s Hospital for an EEG (electroencephalogram) to be done. After the test was conducted, it confirmed that Allucio had epilepsy.
He started treatment at RK Khans Hospital, but for some reason, the medication wasn’t really helping. The doctors then referred him to Albert Luthuli Hospital where he was admitted in July 2016.
The neurologist ran tests and started treating him. We were told Allucio had infantile spasms. The doctors at Albert Luthuli tried to use a variety of medications to help stabilise his condition.
Allucio was later diagnosed with West syndrome epilepsy and I then started to research his condition. Further testing was done, and the hospital discovered that due to so many spasms he’d suffered brain damage.
He used to have 40 to 50 spasms a day. It was really heartbreaking as parents to watch him suffer, and he couldn’t reach the developmental milestones for a child his age.
Allucio is now four years old and his epileptic attacks are under control, but he now has global development delay, so he’s unable to walk or talk yet.
I keep talking to him and trying to motivate him all the time and to have patience. I believe that one day by the grace of God he’ll be able to walk and talk.”