Local Running Community with Big Hearts

Speaking with Mr Pang Wee Khai, Founder of Enjoy Your Run, we learnt why and how Wee Khai (WK) supports Club Rainbow (Singapore) (CRS).  

CRS: How did the group *Enjoy Your Run* come about?

EYR Team at East Coast Park

WK: Enjoy Your Run (EYR) came about during COVID-19 and the relaxation of the control measures. There was also generally more interest in fitness and wellness. A group of friends with some running background came together and decided that it was perhaps more enjoyable to exercise as a group for motivation because running at times requires tremendous discipline to follow through. So that was how we started to gather in small groups in July 2021, on a monthly basis at East Coast Park. It gradually became a weekly gathering for the passionate runners in the group.

Over time, EYR grew organically both in number of active members and the fitness goals achieved. Besides improving general health, several runners smashed their limitations and set new personal records for running - from middle distances to ultra-marathons. What seemed impossible was made a reality due to the strong bonding and teamwork at EYR, both on and off the running course.

CRS: Why have you decided to raise funds for the children of Club Rainbow, and is there any meaning behind the campaign title "Let the children run"?

EYR founder, Pang Wee Khai

WK: I came across Club Rainbow at NUH when my firstborn was born with a genetic condition many years ago. Although we did not engage their services at that time, we came to know about the existence of such charitable organisations, which provide support to families whose children suffer from chronic illnesses. Due to personal experience, it was meaningful to be able to raise funds for an organisation close to our hearts. In fact, there were two online campaigns done previously before the first group effort in 2022 ->

https://www.giving.sg/campaigns/raceto40-marathon-club-rainbow
https://www.giving.sg/campaigns/bryceton-goes-for-10k

Campaign: EYR 2023

http://Give.asia/EYR2023

CRS: Have your group encountered any challenges in your fundraising journey and how did you overcome those challenges?

WK: Generally, friends are supportive of our collective effort. Of course, there are also many other fundraising campaigns out there. It is more about creating awareness and being sincere about what and why we do it.

In terms of challenges, it is inevitable that injuries may happen in the course of getting stronger and fitter. Like all dream journeys, we may face unforeseen circumstances on the road to better health, especially because many teammates are busy working parents. We learn to be patient and share our burdens with each other. In comparison, the children and families of Club Rainbow go through much tougher challenges, which few people can fully comprehend -- we keep this awareness close to our hearts as we fundraise for their cause. 

CRS: How do you shout out for your campaign?

WK: We have been periodically creating awareness on our social media whenever the situation allows. It was also great that we had help with dollar-for-dollar matching by Tote Board, which gives friends more reasons to support our effort.

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Inspired by Wee Khai’s initiative? You can start your fundraising journey with us today!

• For the least effort in managing initiatives and maximum fun
  Fundraise through Ride and Ralk for Rainbows 2023

• Grow the community with maximum flexibility
  Start your own fundraising initiative like Wee Khai, email contact@clubrainbow.org for more details.

Baking: The New Black for Self-care Activity in 2023?

Like many other caregivers of Club Rainbow beneficiaries, Mr Lim, from the chemical logistics industry, has been providing tender care for his youngest son, Jun Rong. He acknowledged that he had enjoyed hobbies like golf but spends much more time with his family now. His family is a major priority in his life, and consider hobbies in the future. Mr Lim frequently hangs out in the living room with Jun Rong. The father and son duo often engage in activities like watching dramas or movies and occasionally playing games on a mobile device.

Before joining the baking programme by Club Rainbow, Mr Lim revealed that he had tried his hand at baking before and had even purchased an oven, but his baking attempt did not turn out well. Mr Lim considered the baking session at Club Rainbow to be entertaining and educational as the professionals who conducted the session shared a good deal of knowledge in baking. For example, how the room temperature can affect the outcome of the pastry, etc.

Aside from picking up some new skills, Mr Lim shared, 'Being able to interact, network, and exchange experiences with others is perhaps the largest advantage. Interacting with other caregivers will help struggling families to know that they are not alone and that others share their struggles. Families communicate with one another, relating and understanding how they feel and what they are going through.'

Mr Lim found the session fun and felt a sense of accomplishment from the baking session because he created something different. He jokingly said, "It’s edible, but always room to improve". He expressed the desire to continue the baking session if the opportunity arises again since learning new skills is always a positive experience. According to Mr Lim, "Baking can be done with family members and is a wonderful way to divert one's attention from worries and concentrate on the task at hand. It can be considered a form of self-care". He strongly recommends fellow Club Rainbow caregivers to participate in the baking programme.

CS2023: The Young Artist Behind The Design

Palette to mix and match

As Club Rainbow’s very own young artist, Jonas has drawn many pieces of artwork and created figures using clays during his free time. Artworks Jonas and his brothers, Lucas and Titus have created over the years have added more colours and uniqueness to the house. As much as he loves all his artworks, names were made for some of his artworks such as a sunflower clay he created. According to his mother, the first piece of artwork created by Jonas was at the age of four and he has been constantly creating pieces of art since then.

Jonas managed to have his artworks exhibited in an exhibition through his school. Not just that, he was also featured in a lifestyle magazine for his artwork. Happiness was reflected on Jonas’ mum’s face as she shared about his achievements and milestones. As the artist of the design that was printed on Travel 2.0: The Travel Organiser, Jonas is the first person to unbox it (Catch the release of the video on Club Rainbow’s Youtube Channel!). The Travel Organiser is a 6-piece set that comes in grey with the design printed in yellow. The designs are small icons Jonas created, including earth, flowers, a blue recycle bin, trees, etc.

Being a recipient of the CRS Talent Development Fund (TDF), Jonas was offered the opportunity to discover his abilities and gradually develop his skills throughout his journey with CRS, attaining accomplishments in the Arts. The fund supports art workshops, and programmes, giving him the lead in assignment opportunities.

For more details on Travel 2.0: The Travel Organiser, visit our Charity Merchandise page.

Innovative Event Management That Gives Back

As part of the vocational development programme, Club Rainbow organised a bake sale earlier this year, in which our beneficiaries and caregivers participated to gain new skills and earn supplementary income.

Dream Station, a local events management and production company, contributed to the sale of baked goods by purchasing items from our beneficiaries. When asked why they chose to support us, they explained that their CSR (Corporate Social Responsibility) arm has the vision to collaborate with charitable organisations like Club Rainbow and to promote sustainability in their events. At the time, their client's CSR programme mandated that the items in their event's goodie bags have a CSR angle, and since it was around Chinese New Year, Dream Station had the idea of sourcing edible goodies to fit the theme. In addition, they also supported two other non-profit organisations (NPOs) besides Club Rainbow.

Dream Station initiated its CSR programme in 2020 and has been actively helping the community. During the Covid-19 pandemic, they provided hygiene packs containing masks and hand sanitisers to foreign workers living in dormitories and donated excess mask stocks to other non-profit organisations. They focus on in-kind contributions and efforts to give back to the community. Dream Station suggests that clients use services offered by charitable organisations and does not charge mark-ups or surcharges if clients decide to engage them. For example, from packing goodie bags to delivering them, it is passed on a cost-to-cost basis, which is atypical of events management companies that usually charge mark-ups for such services. Dream Station offers such angles to all their clients, especially MNCs with their own CSR arms, and the uptake by their clients depends on the business angle. However, Dream Station tries to push for the engagement of charitable organisations.

After emerging from the Covid-19 pandemic, Dream Station plans to restart its CSR efforts, focusing on giving back to society by providing services to help and encourage giving back to the community. If they have excess logistics or stocks after organising events, they give them back to society for better utilisation.

Moving forward, one of the pillars of Dream Station's CSR efforts is sustainability, which aims to reduce the wastage of consumables by encouraging clients to use sustainable supplies. They also want to empower underprivileged employees by hiring freelance staff from lower-income families who have teenage kids or mature workers looking for part-time jobs, providing them with another source of income.

Dream Station will continue fundraising campaigns on the giving.sg platform and will be directly involved physically in fundraising events, such as sourcing in-kind sponsorships for events management to run carnivals. They will also focus on empowering the community, which aligns with what Club Rainbow is trying to achieve through the rollout of vocational programs that support caregivers and beneficiaries, providing them with supplementary income while reaffirming that their journey is not just to take care of people with special needs, but also to show that people with special needs can contribute to the community.

Into the fourth iteration of the programme, one of the CRS participants could work in a baking establishment based on their experience and certification gained from the programme. Club Rainbow is grateful to Dream Station for their support towards the Vocational Programme.

Facing Challenge Head On

The Challenge

Since birth, Nur Izzudin, now 9 years old, has been struggling with an extremely rare skin disease called Bullous Congenital Ichthyosiform Erythroderma (BCIE), with only less than 10 recorded cases in the national records. It is characterized by scaly skin from birth and, thickening and hardening skin which develops as the patient grows older. When he was born, Madam Siti, Izzudin’s mother and primary caretaker, struggled to take care of Izzudin, where even the simplest of tasks could end up hurting the then fragile baby.

When asked if taking care of Izzudin is difficult, she replied:

“Yes, initially, he is so fragile, he is so small, even if I want to carry him, I am afraid that I will injure him unintentionally… but we keep learning about him, how to take better care of him“.

Solving the Puzzle

Due to the nature of the skin disease, any form of friction on Izzudin’s skin would leave an abrasion on him, this means that even putting a shirt on him normally would hurt him. His grandmother then sourced shirts that have zips around the shoulder to facilitate the wearing of the shirt, subsequently, they realized that button-up shirts were easier and better, but they had to find button-up shirts that had soft collars so that it does not cause abrasion on his neck.

A hot day causes his whole body to flare up in patches, causing him great discomfort, conversely, if the weather is too cold, his skin will be too dry and end up cracking. They realized through trial and error that air-conditioning to cool him down is not ideal as it dries his skin, hence, they place fans all around the house.

In facing these challenges, Madam Siti and her family treats taking care of Izzudin as a learning process. They treat it as a cipher they have to decrypt, a code to break and every day, they learn something new that will help them break the code, that will help them take better care of Izzudin, to alleviate his condition.

Clearing Misconceptions & Creating Awareness

Growing up, Izzudin was not cooped up at home to protect him from the external atmosphere, but he was brought out often to allow him to pick up social skills. One of the common misconceptions that the general public has about his condition is that it is contagious and sometimes, members of the public go up to Madam Siti and inquire about it. Madam Siti told us that clearing these misconceptions lends a voice to patients with the disease and empowers them to be more confident in facing the public.

Encouragement for Caretakers

Madam Siti leaves these words of encouragement to caretakers who are facing similar challenges:

“Your child may be a blessing to you instead of a challenge, they are more sensitive and less self-centred than others. Treat your child like how you want others to treat him, don’t coop them up at home, don’t alienate them from society, help to spread awareness of their condition to empower them.”

Care and Support - Being There For Your Child

Featuring 2022 Exemplary Caregiver Awardee, Mdm Junnie Lim

Mdm Junnie Lim, is the mother of Ashley, 19, and has been awarded the Exemplary Caregiver Award for taking care of Ashley. Mdm Lim works full-time, juggling her time to take care of her two daughters both with chronic illnesses.

Ashley began having chronic migraines 4 years ago and was diagnosed with small fibre neuropathy, Median Arcuate Ligament Syndrome (MALS) and Sjogren’s syndrome. Due to a lack of medical information locally and general awareness of Sjogren’s syndrome, an accurate prognosis regarding how Ashley’s case can be effectively treated or cured remains unclear.

When Mdm Lim takes care of Ashley, she shares that as a parent, it is brutal to endure seeing her daughter in pain every day. For Ashley, her condition warrants the use of a port-a-cath.

It has been very tiring for Mdm Lim over the years, constantly worrying for her daughters. They also started to plan for Ashley’s worst-case scenario during surgery. While death plans have always lurked in her mind since she has 2 daughters with chronic conditions, her younger daughter has 2 liver transplant surgeries which have given Mdm Lim the will to fight till the end for her daughter.

Mdm Lim shares that she finds the most joy when they have their family trips together. She finds that it provides quality family bonding time, clear from any digital distractions which lets them truly spend time with each other. She enjoys their travel together in December and always looks forward to it because, to her, no amount of money can buy their meaningful time together. During their vacations, Mdm Lim always plans ahead by seeking out the nearest hospital in case of emergencies and is prepared at all times.

Thanks to Club Rainbow, Mdm Lim has managed to get both financial and emotional support. Mdm Lim first came to know Club Rainbow 16 years ago through 2 doctors, who acted as her pillars of support, when she felt at her wits’ end as she learned that her younger daughter had biliary atresia (a congenital chronic disease where the bile ducts are blocked or too narrow). The Club Rainbow social workers made her feel like family as they helped her through the emotional roller coaster. Club Rainbow has also supported her financially for her younger daughter’s first liver transplant when she had difficulties raising the pre-surgery deposit and once again when her younger daughter underwent a second liver transplant.

Mdm Lim wants to tell the world that not every sickness has a cure, but that is not the end of the world. Not every parent has a smooth journey and she hopes that everyone has more empathy and sympathy toward parents who are going through tough journeys with children suffering from chronic illnesses and undiagnosed conditions. She believes parents with special needs children should tell their story to the world because if parents can talk about it publicly, they can destigmatise their child’s condition and create awareness. Being embarrassed does not help the child and certainly not those around them because those who have not journeyed with the parents will not understand how much the family has endured and how they can help.

Despite all odds in her circumstances, Ashley has stood her ground and fought her illness with positivity and resilience. She currently provides free tuition to children along the borders of Myanmar and Thailand and has registered for the Teach English as a Foreign Language (TEFL) programme. Aspiring to be a social worker to give back to society, she applied for a psychology course at a Polytechnic, which she was accepted into. As we admire Ashley’s never-say-die attitude and wish her all the best, we hope you share her story with your friends and family to raise awareness and support Ashley and her family in their journey.

Celebrating Heroes 2022

Watch the Exemplary Caregiver Video - click here

A son's first hero

Featuring 2022 Exemplary Caregiver Awardee, Mr Gan Keng Aik

Mr Gan, the father of Aloysius Gan, 16, has been awarded the Exemplary Caregiver Award for his efforts in taking care of Aloysius. Mr Gan currently works in physical security at the management level, overseeing the company operations while juggling his responsibilities with his son.

Aloysius, who attends a special needs school, was diagnosed with cerebral palsy at birth. Due to his condition, Aloysius uses a wheelchair and does not have clear speech. But while his motor skills are affected, resulting in reduced finesse in his hands and fingers, Aloysius can independently handle basic tasks in his daily life.

Just like any child, Aloysius’ daily routine revolves around waking up and going to school. Typically, his mother would send him to school and when Mr Gan gets to go into the office later, he spends his morning sending Aloysius to school. In the afternoon, Aloysius’ mum picks him up and sends him to Boccia training until the evening when he will return home for dinner and homework before going to bed. Admirably, Aloysius’ condition has hardly gotten the better of him and against the odds, he has succeeded in representing Singapore on the national team for Boccia and is a Gold medallist in the recent ASEAN Para Games and Asian Youth Para Games.

When Mr Gan takes care of Aloysius, he mentions that one of the most challenging times was the preparation for Aloysius’ Primary School Leaving Exam (PSLE). While his condition does not impact his IQ, Aloysius takes a longer time to grasp concepts and requires lots of practice papers. It was a tedious and repetitive process as Mr Gan had to go through a concept many times. Fortunately, Mr Gan and his wife divide and conquer as they split tasks to efficiently help Aloysius; Aloysius’ mother tackles Mathematics and English while Mr Gan teaches Science. Due to his condition, Aloysius cannot write and has to use a special keyboard that significantly slows him down, warranting almost double the time for each exam paper.

While it can get arduous at times, Mr Gan shares that the most important aspect of caring for Aloysius is finding out how to nurture and mentor him to inculcate the right attitude toward life; to ensure Aloysius has resilience and determination such that despite other people viewing him differently, he can nonetheless rise above it and accomplish his goals. Whether Aloysius succeeds or fails at doing something, Mr Gan always encourages Aloysius. He commends him or motivates him to try again so that Aloysius learns and grows from his experiences.

As a father holding a full-time job, Mr Gan may need to travel overseas for work once every 1 or 2 months. However, he finds that there is always a choice in life and does not feel stressed or burdened to take care of Aloysius. Although Mr Gan may be busy, he actively spends time with his family when he is off work or entire Saturdays with Aloysius in Boccia training. Whether it is family, friends or hobbies, he believes it is a personal preference to choose how time is spent and he chooses his family. Mr Gan feels the most joy when he bonds with Aloysius. Going overseas for competitions allows him to spend quality father-son time with Aloysius. Some of the most meaningful experiences Mr Gan holds dear include the adventure and little moments he shares with his son because whether it is victory or defeat, he sticks by his son. They will win, lose, suffer and share the glory together.

To him, it is the journey that counts, not the destination.

Thanks to Club Rainbow’s support, Aloysius has been receiving funding through the Talent Development Fund (TDF) over the last few years, enabling them to purchase better Boccia equipment and balls for training and competitions that boost Aloysius’ gameplay.

Lastly, Mr Gan wants to tell the world that whether it is cerebral palsy or other illnesses, it remains up to the individual to decide what it means for their life. With the support of family and friends, any child can realise their dream and not let their condition limit them. Mr Gan believes that everyone has the right to chase their dream and live a fulfilled life.

Among other competitions, Aloysius will be playing for Singapore in the 2023 ASEAN Para Games. We wish the father-son duo the best of luck and hope that you can share their story with your friends and family to raise awareness and support them in their journey.

Written by: HCI Project Butterfly Effect
Edited by: Club Rainbow (Singapore)

A brother's unconditional love

Featuring 2022 Exemplary Sibling Awardee, Shuy Yao Kang

Yao Kang, 21, is the brother of Shuy Yao An, 14, and has been awarded the Exemplary Sibling Award for taking care of Yao An. Yao Kang is currently at Nanyang Technological university studying medicine while juggling his studies and his responsibilities with his brother.

Yao An has MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes) which is a condition that affects 1 in 4000 people and results in an accumulation of lactic acid in the blood (lactic acidosis), that can lead to vomiting, abdominal pain, fatigue, muscle weakness and difficulty breathing.  It takes away a person’s bodily functions, making Yao An incapable of walking and unable to consume food through his mouth. As a result, Yao An has to use a specially-designed pushchair to move around and the usage of a feeding tube to get his daily nutrients. Further, he also suffers from seizures, which are hazardous because they can lead to his getting injured, such as a hard impact on the head or a fall. Despite Yao An's inability to express himself verbally, his family can still decipher what he is thinking by reading his body language.

Even though most of Yao An’s basic needs are taken care of by his parents and helper, Yao Kang still tries to help out as much as possible daily. Some of his duties include helping Yao An with his hygiene and changing his clothes. Although these may sound easy, they are no easy task as Yao An is 14 years old, and is of similar build to the youth of his age and it is not easy for Yao Kang to manoeuvre Yao An alone. This is especially difficult while helping him shower as Yao Kang has to hold his brother up for an extended period and shift him around. For meals, Yao An has to eat through a feeding tube so Yao Kang has to prepare the food in advance and plan his time around Yao An’s meal time. Apart from meals, Yao Kang also ensures that his brother takes all the prescribed medications at the correct times and dosage. Throughout the day, Yao Kang uses spare pockets of time in his packed schedule to interact with his brother and carry out activities with him.

On a day-to-day basis, Yao Kang does not feel too stressed by his responsibilities in taking care of his brother as the nature of his brother's condition follows a fairly consistent routine every day, and hence very predictable on what to expect. However, Yao An’s future is still uncertain as his condition and needs may change. As a result, Yao Kang finds it difficult to make long-term plans as he is not sure of when his help may be needed to look after his brother.

Through his years of taking care of his brother, the most important lesson that Yao Kang has learnt is to make the best of what you have and to live life in the present without wishing that things were different.

Lastly, Yao Kang wants to share with the world that individuals with alike conditions to Yao An have feelings too even though it is not easy for them to express. Just like us, they have their interests and we have to find out how to meet those interests by reading their non-verbal cues. Even if they seem uninterested in what we are doing for them, they are incredibly grateful for any help and interaction we can give to them.  

As we wish Yao An and Yao Kang all the best, we also hope that you can share their stories with your friends and family to raise awareness and support Club Rainbow beneficiaries and families in their journey.

Dreaming The Future!

1, 2, 3! and we are in 2023!

In a blink of an eye, we have concluded our 30th-anniversary celebrations with three cheers! Hooray!

Looking back over three decades, we have served numerous children with chronic illnesses and their families. Some of who have made a tremendous breakthrough and become independent, active contributors to the community whilst co-existing with lifelong illnesses. Others have gone before us, having loved ones work through grief and loss workshops with the support of Club Rainbow’s dedicated team of social workers.

From caring for the beneficiaries’ well-being and basic needs to ensuring the deliverance of relevant services based on curated individualised care plans, we see harmonious collaboration between caregivers, social workers and supporting partners. Last year, we welcomed the opening of Sandbox where the heart of creativity, confidence and talents are discovered and nurtured through various programmes held at the centre. Believing in equal opportunities for beneficiaries with medical conditions or developmental issues, the launch of the early childhood programme prepares children for school in areas like reading, writing, etc. The programme embodies our values of respect and resilience, providing a sense of belonging for the beneficiaries all while preparing the children for compulsory education. It ran its first intake in January 2022 and is in its 3rd run this year.

Before the yearend, we introduced a new 3-part series programme under Vocational Development, Bake under the Rainbow. The new initiative covered the basics from Food Safety, Baking sessions to the Bake Sale. The first run of the bake sale was in conjunction with Ride For Rainbows 2022 and the 30th Anniversary Birthday Bash at the Marina Barrage.

Truly this is the ecosystem we want for the children and their families. Dreaming the future with a network of support from the community who comes together as donors, volunteers, partners and corporate to pull resources from various aspects to engage with the beneficiaries and their families.

We have come this far, so what’s next?

Look out for

• New charity merchandise coming in Q2 2023!
• Pre-order of patisserie by our very own caregivers.
• More events coming back, and more volunteer opportunities!
• And what is #CRSUnited? Find out in our next news scoop!

To support our initiatives, begin your journey with us by contacting us via contact@clubrainbow.org.

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Ride for Rainbows 2022 and 30th Anniversary Birthday Bash

Club Rainbow (Singapore)’s biggest event of the year, Ride for Rainbows 2022 and the 30th Anniversary Birthday Bash have successfully concluded on 27 November 2022.

The physical Ride for Rainbows is back after being virtual for 2 years due to the COVID-19 pandemic!

In conjunction with Club Rainbow (Singapore)’s 30th Anniversary, this year's edition for Ride for Rainbows is met with a hybrid format, giving our riders the flexibility to participate in a physical or virtual ride. We also had a birthday bash carnival with a tons of carnival games and rides at the end of the physical ride to celebrate this very special day and spend a fun filled day with our beneficiaries and their families!

On that day, there were over 600 participants and volunteers who turned up at Marina Barrage. This includes 78 families, close to 200 riders and over 100 staff and volunteers.

With that, we would like to take this opportunity to express our utmost gratitude to all our supporting parties, including our beneficiaries and their families, sponsors, riders, donors, staff and volunteers! This event would not be possible without everyone’s help and support. 

We hope to see you all again for Ride for Rainbows next year!

Please email rfr@clubrainbow.org to be a part of Ride for Rainbows next year!