RDSS was honoured to be invited by Ms Lee Chiew Yi from the Values-in-Action (VIA) Committee at Fairfield Methodist School (Secondary) to share what we do with students as part of the school’s Youth for Causes series.
The Youth for Causes talks aim to expose students to the diverse communities that make up Singapore, encouraging empathy, awareness and meaningful action. Each year, RDSS shares the lived experiences of families navigating rare diseases – stories that reflect extraordinary resilience, courage and the quiet determination to continue carrying hope for their loved ones.
This year’s sharing was particularly meaningful.
When one of the invited speakers was unable to attend as he was unwell. Youth Lead Phua Wenxin stepped forward to take on the responsibility. Her decision reflected a reality that is common but often unseen within the rare disease community – siblings frequently mature earlier and shoulder responsibilities quietly, as parents devote significant attention to the child with complex medical needs.
Growing Up as a Sibling
During the session, Wenxin spoke candidly about her journey as the elder sister of Wenjie, who lives with a rare condition.
She shared that the students asked thoughtful and sincere questions – questions that showed not only curiosity, but a genuine desire to understand and support the rare disease community. Many expressed interest in contributing through initiatives and participating in the annual Carry Hope campaign.
One question, in particular, stayed with her:
“Is there any stress related to having a sibling with a rare disease? If so, how do you cope?”
Wenxin admitted she was initially taken aback.
“I never really saw it as stress,” she reflected. “It felt more like a responsibility that came with being a sibling.”
Yet as she considered the question more deeply, she realised that what she experienced was not stress in the conventional sense, but an ongoing process of emotional regulation and adaptation. It meant learning to navigate shifting family dynamics, processing grief and uncertainty, and finding ways to stay strong for others while still coming to terms with her own emotions.
When Wenjie was first diagnosed, she struggled with guilt and sadness. Knowing that his condition would progressively affect his motor skills weighed heavily on her. She found herself wishing she had been kinder in their childhood squabbles. When he underwent a transplant, the uncertainty was overwhelming. The atmosphere at home was heavy; her mother would cry at night, and she and her father would try to comfort her.
To appear strong, Wenxin often reassured her mother and behaved as though she had fully accepted the diagnosis. But internally, she was still processing what it meant – that her brother might eventually lose the ability to speak, walk, or eat independently.
Acceptance did not come overnight. It took time.
Choosing Presence Over Fear
Today, Wenxin chooses to treasure every moment with her brother.
Instead of dwelling on guilt or worrying about what cannot be controlled, she focuses on the present. She has learned that while preparation is important, uncertainty is part of life. Through this journey, she has grown in resilience, adaptability and emotional strength.
“The future will always be uncertain,” she shared. “But that is why life is a journey you have to walk through and experience for yourself.”
Her story is a powerful reminder that rare diseases affect not only individuals, but entire families, including siblings whose quiet strength often goes unnoticed.
Inspiring the Next Generation
The engagement from the students at FMSS was heartening. Their questions reflected empathy and awareness, and many expressed interest in supporting the rare disease community through activities and participation in the annual Carry Hope campaign.
At RDSS, we believe that awareness begins with conversation. When young people listen, ask difficult questions, and reflect deeply, they become advocates for a more inclusive and compassionate society.
We are grateful to Fairfield Methodist School (Secondary) and Ms Lee Chiew Yi for creating a platform where real stories can be shared openly. Through such conversations, we continue to carry hope – together.
%20Committee%20at%20Fairfield%20Methodist%20School%20(Secondary)%20to%20share%20what%20we%20do%20with%20students%20as%20part%20of%20the%20school’s%20Youth%20for%20Causes%20series./ppThe%20Youth%20for%20Causes%20talks%20aim%20to%20expose%20students%20to%20the%20diverse%20communities%20that%20make%20up%20Singapore,%20encouraging%20empathy,%20awareness%20and%20meaningful%20action.%20Each%20year,%20RDSS%20shares%20the%20lived%20experiences%20of%20families%20navigating%20rare%20diseases%20–%20stories%20that%20reflect%20extraordinary%20resilience,%20courage%20and%20the%20quiet%20determination%20to%20continue%20carrying%20hope%20for%20their%20loved%20ones./ppThis%20year’s%20sharing%20was%20particularly%20meaningful./ppbr%20/When%20one%20of%20the%20invited%20speakers%20was%20unable%20to%20attend%20as%20he%20was%20unwell.%20Youth%20Lead%20Phua%20Wenxin%20stepped%20forward%20to%20take%20on%20the%20responsibility.%20Her%20decision%20reflected%20a%20reality%20that%20is%20common%20but%20often%20unseen%20within%20the%20rare%20disease%20community%20–%20siblings%20frequently%20mature%20earlier%20and%20shoulder%20responsibilities%20quietly,%20as%20parents%20devote%20significant%20attention%20to%20the%20child%20with%20complex%20medical%20needs./pfigureimg%20width=300%20height=279%20src=https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-2-300x279.jpeg%20alt=FMSS%20Sharing%20|%20RDSS%20srcset=https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-2-300x279.jpeg%20300w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-2-1024x953.jpeg%201024w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-2-768x715.jpeg%20768w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-2-355x330.jpeg%20355w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-2-193x180.jpeg%20193w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-2.jpeg%201167w%20sizes=(max-width:%20300px)%20100vw,%20300px%20/figcaptionYouth%20Lead%20Phua%20Wenxin%20stepped%20forward%20to%20take%20over%20the%20sharing%20when%20one%20of%20the%20invited%20speakers%20was%20unable%20to%20attend./figcaption/figureh3bGrowing%20Up%20as%20a%20Sibling/b/h3pDuring%20the%20session,%20Wenxin%20spoke%20candidly%20about%20her%20journey%20as%20the%20elder%20sister%20of%20Wenjie,%20who%20lives%20with%20a%20rare%20condition./ppShe%20shared%20that%20the%20students%20asked%20thoughtful%20and%20sincere%20questions%20–%20questions%20that%20showed%20not%20only%20curiosity,%20but%20a%20genuine%20desire%20to%20understand%20and%20support%20the%20rare%20disease%20community.%20Many%20expressed%20interest%20in%20contributing%20through%20initiatives%20and%20participating%20in%20the%20annual%20Carry%20Hope%20campaign./ppOne%20question,%20in%20particular,%20stayed%20with%20her:/pp“Is%20there%20any%20stress%20related%20to%20having%20a%20sibling%20with%20a%20rare%20disease?%20If%20so,%20how%20do%20you%20cope?”/pp /pfigureimg%20width=300%20height=225%20src=https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1-300x225.jpeg%20alt=FMSS%20Sharing%20|%20RDSS%20srcset=https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1-300x225.jpeg%20300w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1-1024x768.jpeg%201024w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1-768x576.jpeg%20768w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1-1536x1152.jpeg%201536w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1-440x330.jpeg%20440w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1-240x180.jpeg%20240w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1-1320x990.jpeg%201320w,%20https://rdss.org.sg/wp-content/uploads/2026/02/FMSS-1.jpeg%201600w%20sizes=(max-width:%20300px)%20100vw,%20300px%20/figcaptionWenxin%20taking%20questions%20during%20the%20sharing%20session%20at%20FMSS./figcaption/figurepWenxin%20admitted%20she%20was%20initially%20taken%20aback./pp“I%20never%20really%20saw%20it%20as%20stress,”%20she%20reflected.%20“It%20felt%20more%20like%20a%20responsibility%20that%20came%20with%20being%20a%20sibling.”/ppYet%20as%20she%20considered%20the%20question%20more%20deeply,%20she%20realised%20that%20what%20she%20experienced%20was%20not%20stress%20in%20the%20conventional%20sense,%20but%20an%20ongoing%20process%20of%20emotional%20regulation%20and%20adaptation.%20It%20meant%20learning%20to%20navigate%20shifting%20family%20dynamics,%20processing%20grief%20and%20uncertainty,%20and%20finding%20ways%20to%20stay%20strong%20for%20others%20while%20still%20coming%20to%20terms%20with%20her%20own%20emotions./ppWhen%20Wenjie%20was%20first%20diagnosed,%20she%20struggled%20with%20guilt%20and%20sadness.%20Knowing%20that%20his%20condition%20would%20progressively%20affect%20his%20motor%20skills%20weighed%20heavily%20on%20her.%20She%20found%20herself%20wishing%20she%20had%20been%20kinder%20in%20their%20childhood%20squabbles.%20When%20he%20underwent%20a%20transplant,%20the%20uncertainty%20was%20overwhelming.%20The%20atmosphere%20at%20home%20was%20heavy;%20her%20mother%20would%20cry%20at%20night,%20and%20she%20and%20her%20father%20would%20try%20to%20comfort%20her./ppTo%20appear%20strong,%20Wenxin%20often%20reassured%20her%20mother%20and%20behaved%20as%20though%20she%20had%20fully%20accepted%20the%20diagnosis.%20But%20internally,%20she%20was%20still%20processing%20what%20it%20meant%20–%20that%20her%20brother%20might%20eventually%20lose%20the%20ability%20to%20speak,%20walk,%20or%20eat%20independently./ppAcceptance%20did%20not%20come%20overnight.%20It%20took%20time./ph3bChoosing%20Presence%20Over%20Fear/b/h3pToday,%20Wenxin%20chooses%20to%20treasure%20every%20moment%20with%20her%20brother./ppInstead%20of%20dwelling%20on%20guilt%20or%20worrying%20about%20what%20cannot%20be%20controlled,%20she%20focuses%20on%20the%20present.%20She%20has%20learned%20that%20while%20preparation%20is%20important,%20uncertainty%20is%20part%20of%20life.%20Through%20this%20journey,%20she%20has%20grown%20in%20resilience,%20adaptability%20and%20emotional%20strength./pp“The%20future%20will%20always%20be%20uncertain,”%20she%20shared.%20“But%20that%20is%20why%20life%20is%20a%20journey%20you%20have%20to%20walk%20through%20and%20experience%20for%20yourself.”/ppHer%20story%20is%20a%20powerful%20reminder%20that%20rare%20diseases%20affect%20not%20only%20individuals,%20but%20entire%20families,%20including%20siblings%20whose%20quiet%20strength%20often%20goes%20unnoticed./ph3bInspiring%20the%20Next%20Generation/b/h3pThe%20engagement%20from%20the%20students%20at%20FMSS%20was%20heartening.%20Their%20questions%20reflected%20empathy%20and%20awareness,%20and%20many%20expressed%20interest%20in%20supporting%20the%20rare%20disease%20community%20through%20activities%20and%20participation%20in%20the%20annual%20Carry%20Hope%20campaign./ppAt%20RDSS,%20we%20believe%20that%20awareness%20begins%20with%20conversation.%20When%20young%20people%20listen,%20ask%20difficult%20questions,%20and%20reflect%20deeply,%20they%20become%20advocates%20for%20a%20more%20inclusive%20and%20compassionate%20society./ppWe%20are%20grateful%20to%20Fairfield%20Methodist%20School%20(Secondary)%20and%20Ms%20Lee%20Chiew%20Yi%20for%20creating%20a%20platform%20where%20real%20stories%20can%20be%20shared%20openly.%20Through%20such%20conversations,%20we%20continue%20to%20carry%20hope%20–%20together./p){kind=link}