Beating the odds
When Jared was born, doctors did not notice anything unusual about him. However, a month later, his parents discovered that his face appeared blue when he took much longer to finish his bottle feeds. Jared was referred to a specialist in neo-natal care at NUH. He was then diagnosed with a heart condition known as idiopathic dilated cardiomyopathy (DCM) which can result in heart failure. What followed was a 51-day hospitalization in NUH Intensive Care Unit (ICU).
Despite receiving a poor prognosis for his condition, His parents have never given up hopes on him. “Time and time again during his stay at ICU, we witnessed him fighting for his life. Jared is a fighter and he wants to live,” Mr Lee shared. After discharge from the ICU, the ordeal continued with Jared being in and out of the hospital for the next two years where a simple respiratory illness could cause him to have breathing difficulties due to his poor immunity.
Knowing Club Rainbow
During Jared’s hospitalization, Jared’s parents chanced upon Club Rainbow’s satellite centre at NUH. Upon learning that Club Rainbow supports children with chronic illnesses, they decided to register Jared as a beneficiary. “At that time, we were at a loss. It was difficult to grapple with the reality of Jared’s condition. Our first social worker, Shu Hong, was there for us, providing invaluable emotional support. He visited Jared when he was warded. After he was discharged, Shu Hong often called us to find out how we were coping and introduced us to other parents whose children were also suffering from heart conditions so we can share information and experiences with one other”, Mrs. Lee recalled. “We were grateful that there was a support group available and that we were not alone in this ordeal.”
Growing up, Jared’s parents become concerned when he did not seem to have much eye contact during interactions. After consulting a specialist, he was diagnosed with developmental delay at the age of two. Subsequently he was referred to attend an early intervention programme at an EIPIC centre. However, for the next two years that followed, Jared continued to show Autism-like symptoms, his parent brought him for re-assessment and that was when the initial diagnosis was changed to Autism Spectrum Disorder (ASD).
A passion ignited
From the age of 3, Jared started showing an emerging talent in arts. With the encouragement from his teachers and therapists at EIPIC, his parents brought him to art classes from the age of 5 to further his interest in art. The influence of characters from cartoons, comics and TV programmes are evident in his drawings. Characters like Pokémon, Ben 10, and SpongeBob are some of his favorites.
Jared made his parents proud when he won his first international award “BIG-i Art Project Award 2016” with an art piece entitled “African Land”. The event was held at Osaka, Japan, and his family were delighted to be given the opportunity to travel to Osaka with him to receive the award.
Today, Jared is a cheerful 17-year- old youth who has a passion and talent for arts. Since 2017, he has participated in various visual arts workshops organised by Club Rainbow, ranging from doodling, stamp carving, storybook illustration to digital art, and more. The workshops led up to a showcase of his art pieces at Dreamseeds Arts Fest.
“We were pleasantly surprised by the attention and effort that Jared puts in during every session. We can tell that he really loves participating in the workshops,” Mrs. Lee added.
“Jared enjoys watching cartoons and comics (GARFIELD, BEANO, DANDY, etc.) and it is from these media that he gets his inspiration. His hobbies like drawing, doodling, making small sculptures, and digital art inspire his passion for his arts. Jared is a Club Rainbow Talent Development Fund recipient. .”
Taking a further step
Selected for the visual arts mentorship programme in 2019, Jared was given one-to-one classes to help advance his visual art talents. Under the guidance of his arts mentor, a range of merchandise inspired by his artwork was produced for sale. The Talent Development Fund awarded to him for three consecutive years from 2017 to 2019 also encouraged him to further his aspiration in arts and the grant is used to offset the course fees of his weekly art lessons.
Apart from developing his artistic talent, a Club Rainbow befriender visits his home every week to help him with his academics. With the support of the befriender tutor, Jared’s results in literacy and numeracy has improved. He scored the best in his favourite subject numeracy.
Growing up is not without any challenges. “When Jared was younger, he used to be very rigid with his routine. He also didn’t enjoy going to extended family gatherings and meeting our relatives. In fact, he wanted to leave almost as soon as we got there. In school, he could get along with his classmates but there was limited communication. Other than his brother and us, Jared did not want to communicate with others. Now that he is much older, he is less rigid with his routines. However, we hope that he can open up and communicate with people around him, not only with his family”, shared Mrs. Lee.
“When I heard from another caregiver that her son has benefitted from the play therapy offered by Club Rainbow, we decided that it is worth for Jared to have a try. After finishing one course of play therapy sessions, we observed improvements in Jared. So much so that we signed him up for the second round. By the time the second round ended, Jared is talking much more than before and is able to relate better to people around him.” continued Mrs. Lee.
A life filled with rainbows and gratitude
These days, Jared looks forward to participating in the social integration programmes organised by Club Rainbow. He has been to various programmes and events, ranging from clay trinket making,
culinary, movie screening to cycling, and the annual 3-days 2-nights Camp Rainbow and more.
Club Rainbow believes in providing opportunities and resources to children and youths and empower them to lead a fulfilling life. Once Jared and his peers from the Arts Development programme were employed to design tote bags for sale to a congregation of conference attendees in collaboration with a corporate partner. On another occasion, he was part of a group effort to create motif-designs that have been printed on the trilogy book series to commemorate Istana’s 150th anniversary. Full of gratitude, Mrs. Lee said, “We are really thankful for the wonderful programmes and services that are provided to us at absolutely no charge. It is a relief to families’ financial burden.”
When asked about the difficulties they face in taking care of Jared. “Not at all. He is an understanding and sweet boy. He will console us when we are feeling down. In fact, looking after him has taught us to be better parents. We learnt to be more tolerant and observant, heightened our awareness of similar behaviors in children who have special needs. Also we learn to actively seek out resources, speak up and advocate for him. Our family of four have become so much closer. Jared looks up to his elder brother and they love each other’s company.”
“We constantly worry about Jared’s heart condition. His future is uncertain. To have him by our side is already a miracle, other than seeing the specialist every 3 months, he has been on daily medications from a young age since his discharge from ICU. A heart transplant may be the only “cure”, but we are not considering this option yet given his current condition,” she added.
“It is important to live each day with gratitude. We will do what we can to help him live life to the fullest. As parents, we have to be role models, be resilient, and be the pillar of strength that our children depend on. By being positive in our words and actions, we can raise happy kids who live life with positivity.” shared Mrs Lee.
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