#SpreadRainbowCheer A Bigger World, in Her Own Way — Shuwei’s Journey of Growth, Inclusion and Possibility

At 19, Shuwei may be a young adult, but she is still her family’s happy, jovial girl — curious, joyful and full of wonder. 

She is non-verbal, but she has her own voice. Through her iPad and communication sheets, Shuwei expresses her choices, preferences and needs, finding her own ways to communicate with the people around her. 

She lives with hypotonia, severe hearing loss and seizures, and was unable to walk independently when she was younger. Today, she walks on her own. Every milestone has taken patience and persistence. And every one has been worth celebrating. 

“Shuwei may experience the world differently, but she has taught us that progress does not have to look the same for everyone,” her family shares. 

Growing Through the Unexpected 

Shuwei was born with a rare chromosomal condition known as 18q deletion syndrome, which affects approximately one in 40,000 people. From birth, she lived with hypotonia and global developmental delay and required support from different healthcare and developmental specialists. 

When she was just two months old, Shuwei suddenly developed a dangerously low platelet count with no clear explanation. Her family could only hope and wait as her little body fought to recover. Thankfully, she did. 

Over the years, her condition has continued to affect many aspects of her development, learning and daily life. But for her family, Shuwei has always been much more than her diagnosis. She has continued to grow, learn, communicate and find her own ways to connect with the world. 

And as she has grown, so has her family’s understanding of what it means to give her opportunities to experience that world. 

Making Room for a Bigger Life 

With Shuwei, holidays are never quite a matter of simply “going with the flow”. Every outing takes planning. Someone needs to support her communication, mobility and daily needs, while unexpected moments can arise at any time — whether it is a lift opening and Shuwei not being the first to enter, a tram moving before she is ready, a reversing car, or simply walking in a direction she did not choose. 

Sometimes, she may kick, cry or throw something. What may look like a meltdown from the outside is often Shuwei communicating that something feels unfamiliar, uncomfortable or overwhelming. 

But her family does not want these challenges to stop her from experiencing life. 

Instead, they continue bringing her to new places, introducing her to new people and giving her time to become familiar with new routines. It takes planning, patience, flexibility — and quite a lot of humour. 

“Life with Shuwei may require more planning, but it does not have to mean a smaller life.” 

For her family, this means looking beyond what Shuwei cannot do and focusing on what they can help her experience. 

Finding Community with Club Rainbow 

The family was introduced to Club Rainbow (Singapore) through Shuwei’s geneticist at KK Women’s and Children’s Hospital, Dr Tan Ee Shien. 

At the time, information about rare genetic conditions was much harder to find. Although they did not meet another family with Shuwei’s exact condition, connecting with other caregivers helped ease some of the anxiety and uncertainty that came with navigating the unknown. 

Over the years, Club Rainbow became a place where the family could learn, connect and grow alongside Shuwei. 

Having a community walking alongside them has been especially meaningful as Shuwei has continued reaching new milestones. 

Gifts That Open Up the World 

Christmas has always been a special time for Shuwei. She loves the jingles, the festive atmosphere and, most of all, opening presents. 

Every year under Club Rainbow’s Kris Kringle programme, families are invited to submit a small wish that their child would love to receive for Christmas under Kris Kringle. Through Kris Kringle, her family has been able to choose gifts that are meaningful to her at different stages of her life. 

She has always enjoyed flipping through books, so one year, they chose books to add to her little collection. Other years, they chose a bag for carrying her favourite things, sportswear for her weekend activities and footwear to encourage her to go outdoors. 

Each gift had a little intention behind it: something Shuwei loves, something she can use, and something that opens up more of the world to her. 

“That is the real magic of Kris Kringle for us.” 

Last year, that meaning became especially clear when Shuwei’s sports shoes had worn through badly because of her walking imbalance. Around the same time, Kris Kringle came along, and the family chose a new pair of sports shoes for her. 

It may sound like a simple gift. But for Shuwei, it meant being able to continue walking steadily, staying active and going out each day. A pair of shoes became an opportunity to keep moving. 

Small Moments, Meaningful Milestones 

For Shuwei, experiences that may seem ordinary to others can be significant milestones. 

New places, unfamiliar people and new experiences can feel overwhelming, so every opportunity to participate and practise matters. 

Going somewhere new. Meeting people. Making a choice. Simply having fun. Each is a step forward. 

“Inclusion is not just bringing someone along,” her family reflects. “It is giving them the support, patience and opportunity to participate in their own way.” 

That perspective has shaped the family’s journey with Shuwei — and has helped them celebrate progress in all its different forms. 

A New Chapter at 19 

Over the past 19 years, Club Rainbow has been part of many chapters of Shuwei’s life. Her family even has an annual tradition of marking her birthday with a Swensen’s ice cream cake — a small tradition that has accompanied her journey through the years. 

They have watched her grow from a child who could not walk independently into a young woman who now walks on her own. From being non-verbal, she has grown into someone who confidently uses her communication device to express her choices. 

Today, she participates in weekly sports, meets new people and continues building her confidence. 

Now, at 19, Shuwei has graduated from school and entered another new chapter. Her familiar school routine is gone, and once again, the family finds themselves at the drawing board — helping her adjust to new activities, people and schedules. 

There are challenges, too. Since January alone, the family has had to repair eight broken iPad screens. When communication becomes overwhelming, sometimes even Shuwei’s beloved iPad gets caught in the action. 

But they keep going. Because Shuwei keeps going. 

And Club Rainbow continues to provide the encouragement, connection and opportunities that help families like theirs discover what their children can do and what they enjoy. 

Turning Generosity into Possibility 

For the donors and partners who make Kris Kringle possible, Shuwei’s family has a heartfelt message: 

“Thank you for turning generosity into possibility. Thank you for standing alongside our families and reminding us that we do not have to navigate this journey alone.” 

A gift may seem small, but to a family, it can mean so much more — a moment of joy, an opportunity to participate, or simply the reassurance that their child is seen and remembered. 

For Shuwei, it is the jingles, the lights, the familiar faces and the excitement of opening her presents. 

Behind that happiness is something even more meaningful: the reminder that she belongs, and that her joy matters. 

As children grow into adulthood, the need for community and meaningful opportunities does not disappear. In many ways, it becomes even more important. 

Opening the Door to Possibility 

For anyone thinking of donating or fundraising for Kris Kringle this year, Shuwei’s family has a simple message: 

“If you are wondering whether your contribution can make a difference — yes, it can.” 

“You may see a present, but a child may see possibility. You may support an outing, but a family may experience belonging. You may make a donation, but a parent may feel that someone is walking alongside them.” 

This year, Shuwei is learning to navigate a whole new rhythm of adult life. There have been challenges, but she is also meeting new people, trying new activities and slowly building her confidence. 

That is why support matters. 

Whether through a donation, fundraising campaign, volunteering or simply sharing the Kris Kringle cause, every act of support can help create more opportunities for children and young people like Shuwei to participate, connect and belong. 

For Shuwei, adulthood is a new beginning. Her family may be back at the drawing board, but this time, they bring with them 19 years of experience, resilience, hope — and a community around them. 

Seasons change. Children grow. Life changes. But kindness keeps showing up. And sometimes, one little gift can help open the door to a much bigger world. 

This festive season, support our children like Shuwei via #SpreadRainbowCheer Fundraising Campaign and help give joy and hope, meaningful experiences and opportunities to children and families supported by Club Rainbow (Singapore). 

Donate today, start your own fundraising campaign or spread the word with #SpreadRainbowCheer. Together, we can make this season a little brighter for our children.  

About Club Rainbow (Singapore)     

Established in 1992, Club Rainbow (Singapore) is a non-profit organisation dedicated to supporting children with chronic illnesses, many of whom have disabilities and special needs, and their families. Anchored in our commitment to empowering individuals to lead dignified lives and become active contributors to society, Club Rainbow delivers more than 30 critical programmes, services, and assistance schemes to support our children and their family members.de 

Website: https://www.clubrainbow.org      

Contact number: 6377 1789     

Email: contact@clubrainbow.org     

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