“As a single parent, there was nobody by my side to tell me what I should do,” Vanessa says as she holds back tears, remembering the difficult times she had. Beside her, her son fiddles with his toy, absorbed in his own world.
When you first meet him, 9-year-old Lucus may seem like any other healthy child his age, but beneath his cheerful demeanour tells a different story. Lucus suffers from a rare and lesser known neurodevelopmental disorder called Angelman syndrome.
Angelman Syndrome is caused by a deletion or inactivation of genetic material in chromosome 15. This condition is generally characterised by the symptoms of developmental delay, learning disabilities, speech impairment, seizures, sleep disturbance, and movement disorders such as jerky movements or problems with walking. Individuals with Angelman syndrome are usually happy, easily excited, hyperactive, have short attention span, and often laughing and smiling. They are also highly attracted to water.
At a young age of 6 months, Lucus was diagnosed with Angelman Syndrome. When he was 8 months old, he had a fever and suffered a seizure that lasted 20 minutes long, causing damage to his brain.
Lucus’s mother, Vanessa, was naturally devastated by the diagnosis and initially berated herself for his condition. “After putting him to sleep, I would cry,” Vanessa tells us, recalling that it took a year for her to finally come to terms with his diagnosis and accepted that the condition was going to be a permanent part of their lives.
The first few years of Lucus’s childhood were especially difficult on her, as a single parent who had to take care of two young children. She had to quit her job in order to become a fulltime mother and caretaker. Although her parents were initially unable to accept Lucus with his condition, it took them years before they accepted their grandchild and offered support to Vanessa. Her parents took turns to look after Lucus and helped her financially to lessen her burden.
Vanessa’s mindset started to change for the better after she enrolled Lucus at a special needs school. It was there that Vanessa discovered that there were other children who had conditions more severe than Lucus, and she learned to be thankful that Lucus was able to swallow on his own since birth, and did not require a feeding tube. Many individuals with Angelman syndrome are unable to eat on their own as they have problems swallowing and require intubation instead of ingesting food orally. Lucus, on the other hand, is able to eat on his own and actually prefers food with harder or crunchy textures for sensory stimulation.
Although some of his friends with similar condition can walk, either with aid or on their own, Lucus is still unable to walk. As much as possible, Vanessa tries to teach Lucus how to walk, and gives him massages when she can in order to ensure that the loss of ability do not lead to muscle atrophy.
As Lucus is still dependable on a baby stroller to move about, it has also led to unwanted comments from strangers in public, especially adults, asking why he is still sitting on a pram when he is already a big kid. Vanessa knows it’s not their fault for asking, but she sometimes feels sad hearing these comments.
Lucus also attracts negative attention when he sometimes reaches out for things in public, and strangers remarked harshly that he is an ill-behaved child. As a friendly, playful, and interactive child who’s easily excited, Lucus tends to reach out for things that interest him – be it people or objects; and people don’t understand that he is unable to control his own actions.
As Lucus looks perfectly normal, people don’t realise that he has a neurodevelopmental disorder, and judge his behavior as abnormal for a child his age, or as a result of poor upbringing – a sad reality for individuals with disorders that don’t have significant physical abnormalities.
For the past 9 years, Vanessa was afraid of asking for help and support due to negative opinions, blaming herself for his situation. Now she is more open to receive help for her children as they are both in the stages of growing up. She says, “I’m thankful for the counselling and encouragement from the teachers in the school. Through their care and support in recent years, I’ve seen improvements to Lucus’s development.”
Vanessa affirms that Lucus has made her a better person saying, “Throughout the 9 years, Lucus has given me strength and molded me into a strong woman.” She hopes that through her own growth, she can eventually provide a better life for her two children.
Vanessa is indeed strong and understands that she should not take kindness for granted.
She tells us, “Those who have rendered support can only help you once, and not forever. Even if they’re your friends, it’s not the solution to life. Most importantly, I must be independent and learn to handle things on my own.”
As difficult as it may get, Vanessa has kept her hopes up. There is nothing that Vanessa wants more than further improvements in Lucus’s condition saying, “My greatest wishes for him right now is for him to be able to walk on his own, and to hear him call me ‘Mommy’.”