Project Twilight helps children and young adults develop their potential in the face of their medical challenges.
The adolescent and young adult years are critical to shaping our self-esteem and identity. Most of us also spent the bulk of this stage of life carving out our plans for the future, be it romantic relationships, education or career paths. Just like us, young adults with life-limiting conditions grapple with challenges of self-worth too. Yet, when their ailments require their physical health to be prioritised, aspects such as psychosocial and emotional needs as well as plans for the future inevitably take a back seat. These individuals traverse a unique path — one that requires a delicate balance of coping with their medical conditions as well as meeting their developmental needs.
Through its Star PALS (Paediatric Advanced Life Support) programme, HCA Hospice (HCA) extends palliative care to children and minors with life-limiting conditions. Beyond delivering fundamental medical care, the programme also supports them in identifying their latent psychosocial goals and needs through an offshoot initiative, Project Twilight.
At the heart of Project Twilight is the humble goal of helping every young adult derive greater meaning despite their uncertain future, and the simple belief that they deserve the chance to bask in the rich purpose of life. “We recognise that having a life-limiting condition does not limit their aspirations,” explained Star PALS Programme Coordinator Winiline Chan. Despite their medical vulnerabilities and unpredictable prognosis, Project Twilight seeks to give each patient the opportunity to understand and experience the excitement of life as a normal young adult.
Enabling Self-Discovery and Building Friendships
Through Project Twilight, HCA empowers patients aged 15–35 years old to set their own course, and this process begins with helping them learn more about themselves. “What do you like to eat? What do you enjoy doing?” Having a casual chat with new patients encourages them to open up about themselves, their interests, and areas for meaningful exploration.
Living a life centred around their medical condition meant that patients were mostly cooped up at home and associated with the same, small group of people. To introduce some form of public interaction, Project Twilight organises excursions to places that patients have not been, allowing them to experience life beyond the walls of their home. The group setting also brings patients together, encouraging interactions among peers with similar circumstances and the development of new friendships.
It was on a trip to Bird Paradise that Zixuan and Netra first met, marking the start of a beautiful friendship between the two 19-year-old patients who supported each other while growing in their own ways.
A Journey of Development and Growth
Zixuan, who has a heart condition that makes her prone to breathlessness, was reserved when she first joined the Star PALS programme. Over time, her bubbly personality came through, revealing her keen interest in the arts. Despite her love of singing, she lacked the confidence to sing in front of others. With encouragement and reassurance from the team, Zixuan found her courage and delivered her first-ever performance to her parents. She eventually overcame her stage fright and now does not hesitate to belt out her favourite songs in front of a large crowd.
To expose her to more art forms, she was treated to a wheelchair dance concert, where she not only thoroughly enjoyed herself but also came to the realisation that wheelchair-bound people like herself are capable of more than she imagined. That sparked off Zixuan’s new-found desire for dancing, which Winiline and her team satisfied by planning classes for her.
Similarly, Netra’s confidence in expressing her autonomy has grown tremendously. Having battled cancer and undergone treatment throughout her childhood, she was extremely reliant on her parents and lacked a channel to express herself. For convenience when using the bathroom, her mother’s default outfit choice for her had always been a dress. After obediently donning similar clothes daily, she now states her preference to wear pants instead. During a baking session, Netra also turned down assistance with putting on gloves, stating that she could manage on her own. And manage she did, a testament to how much she blossomed throughout her time with Project Twilight.
Project Twilight also hopes to help other children and young adults accustomed to receiving help realise that they possess the power to care for others too. For the first time, the two girls baked lemon tarts for other patients, and they later shared their happiness in being able to make a kind gesture for others. Beyond empowering them, the experience also instills in them the value of rendering assistance when others need a helping hand.
Embracing Independence
Contrary to most family oriented care approaches, Project Twilight encourages parents to let their children participate in activities on their own. “Many parents assume that they would be part of these activities,” Winiline shared, “but we request that they allow their child to come alone. Ultimately, we want to curtail the patients’ dependence on their loved ones and encourage independence.”
Even without their parents, the patients are in good hands, with a close network of staff, volunteers, and patients who support each other. Some of them have grown from strangers to acquaintances and eventually to friends. Zixuan and Netra even follow each other on Instagram to stay connected outside of activities! While she may not be as fond of dancing as Zixuan, Netra nevertheless stays beside her friend during dance lessons, supporting her quietly.
Project Twilight strives to embark on a transformative journey of self-discovery and fulfilment with each patient while respecting their wishes, and this is what sets it apart.