Nami was diagnosed with a hereditary disease, Spinal Muscular Atrophy (SMA) Type II, at age one. This disease causes weakness and wasting of the voluntary muscles in the arms and legs.
The disorder is caused by an abnormal or missing gene, which is responsible for the production of a protein essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and perish. There is no cure for this disease and treatment consists of managing the symptoms and preventing complications.
Today, wheelchair bound Nami is a bright 14 year old who excels in academic subjects at his school. “My favourite subjects are math and science” says Nami. He is a well-rounded teenager who enjoys extra-curricular activities such as chess and he is proud to be a boy scout. Like most youths his age, he is rather attached to his iPad, a gift from his parents he cherishes deeply. By nature, Nami is rather shy but friendly, a natural problem-solver – he is determined, with a healthy outlook on life.
An avid chess player, Nami has taken part in many chess tournaments; to date, his crown achievement was when he represented his country last year at the Youth Paralympics Games; in which he had won a gold medal. Nami was thrilled to have had such an opportunity to represent his country and play among international peers.
“Participants are given an official Youth Paralympics Games uniform – orange track pants, a matching wind-breaker with your country’s name and flag, and a pair of sport shoes. Nami was so excited to be able to represent his country, he wore the uniform to sleep the night before the game!” Midah, Nami’s mother says. “As a mother, I could not be more proud of my son” she adds. Her eyes twinkle with pride.
At the Youth Paralympics Games, Nami witnessed the blind playing chess and was intrigued by the new dimension it brought to the game. His natural instinct to try new things and solve problems got the better of him. He now owns his own blind-chess board and armed with blindfolds, he has taught himself how to play the game. Nami aspires to master the game someday.
The strength of a support system
Midah is Nami’s source of positive energy and strength. She is his confidante and best friend above all else and is also his main caretaker. Midah is a dedicated mother who unrelentingly sacrifices her days to care for Nami.
She accompanies Nami to school and waits throughout the day to help him navigate around school. When Nami has chess tournament training that can sometimes go on for several weeks and other such activities, she sits patiently at the venue all day to help him get around.
“It does get rather boring sitting around all day, but watching the smile on his face makes it all worth it” Midah says. “It does not feel like a burden, I do this so that my son has the chance to interact with people and it is a chance for him to participate in competitions. He feels so good about himself when he enters competitions. I cannot deny him that.” she adds. Nami’s father is usually by his side when he is not working.
Nami’s father Nizam plays an equally important role in Nami’s life. Nizam is friendly and kind – his deep love and concern for his son is evident in the way they communicate. Nizam, the sole breadwinner of the family commutes between working hours to transport Nami between school and other various activities. It is clear that Nami’s family provides a strong support system for him to thrive on.
Paediatric Palliative Care
Nami began receiving paediatric palliative care four years ago. Palliative care is no stranger to Nami’s family – it has been a key support system for them for over a decade. His second sister, Atikah, passed away because of stage 4 ovarian cancer that went undiagnosed in 2009. However, she had the same condition Nami faces now and also received paediatric palliative care from Hospis Malaysia.
In tears, Midah once explained “I simply have no idea how I would have coped with bringing up Atikah and now Nami if it were not for the guidance we got from Hospis Malaysia. The nurses are always there to answer questions if you are unsure of something. It’s comforting when you are in a panic and worried about your child.”
Paediatric palliative care has given Nami a new lease on life, and he is making the most of every minute. He even looks forward to being an uncle, constantly asking his just-married eldest sister to get pregnant soon.
This article was first published by Hospis Malaysia in 2014. It is republished with permission. Find out more about the work of Hospis Malaysia on their website.