When Rasilah Said’s third child was born, the family had no idea that things were about to change in a big way for them.
“Mohd Fahmi Yusof was born absolutely normal,” said Rasilah, the mother of four grown-up kids. “Four months later, my child was struck down by meningitis.” (Meningitis is an acute inflammation of the membranes surrounding the brain and spinal cord.)
“We didn’t know how he contracted meningitis. He had an unusually high fever which refused to subside. It was almost a week before the specialist finally diagnosed Fahmi’s condition,” said Rasilah, 58.
It was the first time that Rasilah and her family had heard about meningitis. Fahmi developed seizures, and became paralysed after several episodes of epilepsy, Rasilah recalled.
“I had to take it bravely. I had to be strong for my other kids and reminded myself and my family that what had happened was no one’s fault. The most important thing was to work closely with the doctors and healthcare service providers.”
Rasilah followed all the doctor’s instructions.
“I had to take note of the frequency of the epileptic attacks, how violent each episode was, and how my son reacted to each one of them. Was he shivering or screaming? It was unbearable for me to stand by helplessly and watch my son go through each attack, but I had to pull myself together. Such feedback was vital in helping the doctor decide what medication was suitable for Fahmi, the dosage needed, and when to switch medication.”
Rasilah said it was especially tough during the early days. Doctors told her that babies with severe meningitis had a 50% chance of survival. Many did not make it.
“At that juncture, I handed Fahmi’s fate to God and prayed for the best.”
Fahmi spent another two months in the hospital. He developed hydrocephalus (build-up of excess fluid in the brain). Doctors placed a permanent shunt behind his ear; the tube goes right down to the stomach to discharge fluid.
Today, Fahmi, 22, is bedridden. He is fortunate to have a family who loves him dearly.
“I’ve learnt to look at life and things positively. Even though Fahmi is still very much like a baby today, I am thankful that he can turn left and right in bed on his own.”
Rasilah said she is blessed to be with her son all the time. Although the doctors are not sure of Fahmi’s ability to respond to his surroundings, Rasilah knows Fahmi is aware of her presence. He also knows when there are visitors around.
Fahmi will sometimes smile when his mother talks to him. He wakes up at 5:30AM every day. His mother will clean and dress him up for breakfast.
His loves chicken and fish. These are cut into tiny pieces and fed to him. Fahmi drinks fruit juices, tea and coffee. Durians are his favourite treat. These are stocked in the freezer and are available to him at all times.
Fahmi requires two persons to carry him into the bathroom for his daily bath – a task which has become increasingly tough for his ageing parents.
Doctors had recommended that Fahmi be put on a swing daily as therapy for brain stimulation. However, Rasilah and her husband are unable to handle that, physically.
“In overseas countries, the government provides personal care attendants to help the disabled and the elderly with tasks such as bathing, cooking, cleaning and other living skills,” Rasilah pointed out.
“It is high time the Women, Family and Community Development Ministry and National Welfare Department started planning and providing such services for disabled and elderly persons who have ageing caregivers who are no longer able to offer such vital services to their loved ones,” said Rasilah.
“As far as we know, nothing has been done to meet this critical need in our country,” she added.