Twenty Years of Rati’s Legacy: The Light and Weight of Carrying Hope
Published: Monday August 31, 2026.
For twenty years, one little girl has inspired a global movement of advocacy and hope for children with retinoblastoma, survivors, families, and all who walk beside them. WE C Hope CEO, Abby White, reflects on carrying Rati’s legacy. She explores the joy, burden, and enduring purpose of sustaining hope while caring for others.
Rati at the Toronto Ronald McDonald House, during treatment in Canada.
Reflecting on Rati’s Legacy.
On 21 August 2006, a little girl named Rati died. You probably already know her story. I’ve written much about Rati and her family, how she spurred WE C Hope’s foundation, our global retinoblastoma focus, and our pioneering child life work in Africa and beyond.
Anniversaries invite us to look back. And as this milestone approaches, I am reflecting on what it has meant to carry Rati’s legacy for two decades. Both the progress that has grown from her life, and the journey of carrying our work forward.
I have thought much about hope, advocacy, and the people who devote themselves to helping others. Along the way, I ask: Who cares for the hope-bearers of our community?
This question feels especially timely as we prepare to gather again for 2026 One Rb World on September 12-14. This year’s meeting includes more conversations than ever before about sustaining ourselves and each other.
In this article, I reflect both on what has grown from Rati’s life, and also on what hope asks of those who carry it forward. We most often speak of hope as something bright and life-giving. It is. Yet sustaining hope over many years also has less visible costs that we rarely acknowledge.
I share some of my personal journey here because I believe caring for the hope-bearers is a vital part of caring for our entire community. This may be one of the most important lessons Rati continues to teach me.
Retinoblastoma affects the whole child, the survivor, the family, and everyone who walks alongside us. The growing focus on holistic care for all in our One Rb World community is vital to ensure everyone’s wellbeing and sustainable progress.
Twenty years ago, I never imagined how responding to one little girl’s need would shape the retinoblastoma world, nor what it would ask of me.
In This Article:
Looking back to a wider horizon…
An Unexpected Beginning
When Rati’s mother, Salome, first contacted me, WE C Hope didn’t exist.
One year earlier, I had created a simple website offering signposts to reliable retinoblastoma information and practical tips from parents. I hoped it might help offer answers and guidance through common challenges. That was all.
The website emerged from one of the most difficult periods of my life. Immense personal trauma marked a threshold moment in 2003 – there will always be life before and life after my journey home from the Rb Family Day that occurred on my birthday. A defining personal experience, it changed me and my relationship with the retinoblastoma community.
It affected my mental health, my capacity to trust, and my ability to receive the very support I encourage others to seek. It became part of the invisible weight I have carried into every conversation, email, conference, and project since.
By September 2004, I was questioning my worth and struggling to imagine a future for myself. Then, on September 29th, Michaelmas, Salome’s four-line message arrived. The timing has always felt significant. Michaelmas commemorates Saint Michael. Patron saint of the sick and dying, many believe him to defend against harm and evil.
Coincidence or providence? I only knew that after spending much of the day overwhelmed by thoughts about my value and place in the world…, Salome’s email appeared in my inbox asking for help to save her two-year-old daughter’s life.
I never intended to found a charity – I certainly never imagined leading one. I was (still am) an introvert with a tiny network of contacts, no fundraising experience, and no organisational ambition. If pressed on my true desire, I would have said, “I want to write fiction that feeds the soul”.
But here was a child who needed urgent medical care that her family could not access alone. To receive donations legally on Rati’s behalf, we had to establish a charitable organisation.
So, with the first major gift from the parents of retinoblastoma patient Daisy Lloyd, Daisy’s Eye Cancer Fund was born. I had no grand vision beyond facilitating care for one child. Fundraising for Rati alone was a colossal challenge.
Remembering that time, I’m awed by how much of what followed emerged in the same way. We have never begun with ambitious strategic plans. We asked what one child, one medical team, or one country needed, and tried to respond within the limits of our capacity.
The early weeks of Rati’s journey taught me another valuable lesson about advocacy. Local newspapers followed her story while she was in Oxford on her way to Canada for treatment. One front-page headline declared, “I’ll save her life”. I never said those words.
Even now, twenty-two years later, that feature still makes me cringe. I wasn’t Rati’s doctor or performing miracles. I was trying to connect one family with the expertise they needed.
This was my first tame glimpse into media manipulation. Advocacy can be misunderstood, misrepresented, and sensationalised. Anyone’s story can be subtly turned into a narrative that departs from reality.
Since that experience, I have been cautious about allowing myself to become the story. WE C Hope has always been Rati, Daisy, their families, the professionals who cared for them, and the community we continue to work for around the world today.
A Red Admiral feeds on the nectar of a Michaelmas Daisy.
From One Child to Many
Rati’s treatment did not end as we had hoped, but her story continues. Her legacy has bloomed into something more beautiful than any of us dreamed of back in those dark days of 2006.
The organisation created to help one child embraced families, survivors, and medical teams around the world. We formed Daisy’s Eye Cancer Fund UK and Canada in 2004 to support Rati’s care. Daisy’s Eye Cancer Fund USA came in 2012, responding to needs across the country and worldwide. In 2016, we rebranded to World Eye Cancer Hope – WE C Hope.
And in September 2026, WE C Hope Oceania is about to launch. Based in Melbourne, the chapter will serve Australia, New Zealand, and the Pacific Island nations and territories. One of the first major goals is to fundraise for and host the One Rb World Sydney conference in September 2027.
The span and accomplishment of our journey is hard to comprehend. One child, her mother’s desperate email, my amateur website – converging on a day when hope for my own life had disappeared. Now we have a global community of change-makers.
Rati, her parents, John and Salome, and three sisters, Bame, Naledi, and Thabitha, during treatment in Canada.
Seeding Hope from Roots and Wings
Rati had a special way of uniting people. This little girl, so full of light, hugs, and smiles in life, continues to stand at the heart of our One Rb World, holding thumbs up to love, hope, and progress.
After she died, her ocular oncologist, Brenda Gallie, and I travelled together to Kenya. I’m sometimes asked why we invested there, rather than in Botswana, Rati’s homeland. The decision was a response to medical care structures and strategic opportunities. It was also personal for me.
My father was born in Kenya, and diagnosed with bilateral retinoblastoma in Nairobi in 1946. He instilled in me a love for the country of his birth and a deep respect for her people. He died from a second primary cancer in 1997, seven years before I received Salome’s email. So he never knew of the hope emerging from his story.
Every time I return to Kenya, he is with me. I wonder what he would make of the country’s progress. Children surviving, increasingly with useful vision, when in his childhood, this cancer was a death sentence for most. I imagine the conversations we might have shared about the clinicians and families, programmes and friendships shaping my life.
My father’s legacy is woven into the Kenya National Rb Strategy. Seeing children survive and thrive brings me great joy – and I also feel an enduring sadness that he isn’t here to share the advances with me.
Coordinated retinoblastoma care in Kenya has transformed lives. We’ve worked together with outstanding doctors, nurses, pathologists, pharmacists, child life specialists, researchers, parent and survivor advocates, civic leaders, and partner organisations. Over the years, collaboration has:
- Increased awareness and early diagnosis.
- Improved prompt access to care.
- Streamlined pathology.
- Developed child life services.
- Strengthened family support.
- Created opportunities for eye salvage
Twenty years ago, less than one in four children who reached specialist care survived retinoblastoma. Today, three out of four are cured, and more children are being diagnosed early, when there is potential to save some vision.
A child life specialist helps a young patient learn about their medical care with a specially designed medical play doll that has a removable eye.
Kahaki Kimani M.D. examines a patient with the first Retcam in sub-Saharan Africa, donated by WE C Hope in 2009.
Bringing Rati’s Legacy Home
Kenya is an ophthalmology training hub in Africa – this is one big reason we began there. So it feels especially poignant on Rati’s 20th anniversary that another ophthalmologist is leaving Nairobi, taking valuable retinoblastoma care skills to her home team in Botswana.
I’m delighted that WE C Hope is supporting this growing capacity through a new collaboration with the Botswana-Baylor Partnership. We’re donating 25 Arclight ophthalmoscopes to strengthen community screening and early detection.
Since 2007, the partnership between the Government of Botswana and Baylor College of Medicine has advanced oncology care alongside education, research, and community outreach. This is the only childhood cancer care development initiative in Botswana, and our collaboration brings the Arclight into the established network of child-centred care.
Only two or three children develop retinoblastoma in Botswana each year, but the small numbers don’t make awareness and early detection less important. Too often, children are diagnosed when the cancer is advanced and opportunities to save life have narrowed.
The Arclight is a compact, solar-powered ophthalmoscope that enables healthcare workers to examine the fundal reflex, identify concerning signs, and refer children quickly to specialist care. Combined with professional education and public awareness campaigns through our friends at KnowTheGlow, this simple tool can help bring children into life-saving expert care sooner. Hundreds of Arclights donated by WE C Hope are already changing children’s lives across Africa and Asia.
We can learn much from Botswana. Most global retinoblastoma initiatives focus on countries with large numbers of affected children. But many nations have only a handful each year, and those children need effective routes to early diagnosis too.
What we learn about awareness, screening, referral, and specialist care in Botswana may help us develop practical approaches for other smaller populations around the world. Every child matters, whether they are one of hundreds newly affected in their country that year, or the only child with retinoblastoma.
For two decades, Rati’s legacy has grown beyond the borders of her homeland. We stand in a significant moment as the knowledge nurtured through our work in Kenya now travels with an ophthalmologist back to Botswana, alongside our new partnership supporting earlier diagnosis. Twenty years after she died, part of the hope she inspired is finally going home in her name.
Growing Hope Around the World
For many years, I watched families, survivors, clinicians, and researchers working with extraordinary dedication, often in isolation. Everyone held valuable knowledge, but lived experience and professional expertise rarely met. Priorities differed, and there were few opportunities for shared understanding and collaboration.
Kenya’s National Strategy proved that bringing people together strengthens the entire group. The One Rb World conference took that principle global in 2012, uniting personal insight and scientific evidence at the first meeting in London, England. Survivor and family voices matter at this conference; we learn from one another, and we become stronger advocates for safe care and the best outcomes for everyone.
Establishing One Rb World and watching the conference grow has been one of the greatest privileges of my life. Hope grows best when shared, and there is no greater forum in our global Rb network to unite and fill our individual and collective well of courage, optimism, and motivation.
Over twenty years, I have watched hope take root and blossom.
Parents are better equipped to recognise the signs of retinoblastoma because information is more available. Families are accessing expert care, peer support, and trustworthy resources that were once out of reach. Treatment continues to advance, collaborations flourish across borders, and opportunities emerge that seemed impossible when Rati first came into my life.
The collective voice of parents and survivors is also growing. We are stepping beyond traditional roles as our own medical manager or caregiver; and fundraisers for treatment, support services, and research. We are becoming advocates, educators, researchers, and leaders for patient-engaged action.
I don’t think hope can be held without action. It’s something we nourish. Sometimes it feels joyful, sometimes humbling. And sometimes – though we seldom speak of this – hope becomes a weight we carry.
A small group activity during a session at One Rb World 2017.
David Freyer M.D. delivers his presentation during the survivorship panel, One Rb World 2024.
Members of the panel “We Can’t Save Every Eye, But We Can Try to Save Every Life”, One Rb World 2024. L-R: Clayonia Colbert-Dorsey, Dr. Sandra Staffieri, Christina Stathopoulos M.D., Furqan Shaikh M.D., Maura Di Nicola M.D.
WE C Hope’s Child Life Specialist, Morgan Livingstone, guides our child life kiddos in creating prosthetic eyes out of clay, One Rb World 2024.
Mark Lubash and Lennox Ellis were our oldest Rb survivor and youngest patient at One Rb World 2024.
The Hope I Carry
Hope is described as an optimistic state of mind, a desire for positive outcomes, and a belief that they are possible. It is the motivation fuelling our strength through tough times and challenges; and confident trust in a brighter future. Many say it’s the drive to look past current pain and believe change is coming.
The longer I walk this path, the more I understand that creating, nurturing, and sustaining hope asks more of us. The act of carrying hope can itself become painful, and we need a special kind of hope to heal and thrive when this happens.
Over the last few years, while thinking about my journey with Rati from 2004 to this month’s anniversary, I’ve also reflected on what carrying hope for her life and legacy has required personally. Along the way, I’ve grown more aware of burnout and how it affects me.
Burnout is more than being over-tired after a long week. It’s a state of profound physical, emotional, and mental exhaustion caused by prolonged stress, and it can affect anyone.
For me, it’s manifested most significantly as feeling drained, irritable, impatient, cynical, unmotivated, overwhelmed, scattered, uncreative, and deeply inadequate. I’m constantly fatigued, and I’ve been sick more than usual in the last year. My hermit-mode is fully engaged, and while I’m working longer hours, I procrastinate more, achieve less, and feel disconnected from our mission.
Understanding burnout and identifying it in myself helps me make sense of my experience, and allow myself grace. More recently, while reading A Prescription for Burnout: Restorative Writing for Healthcare Professionals by Carolyn Roy-Bornstein, I learned another phrase that speaks to a deeper pain.
Moral injury describes the psychological, social, and spiritual distress of witnessing, doing, or failing to prevent acts that violate an individual’s moral code, resulting in intense guilt, shame, and anger.
A Prescription for Burnout explores the emotional and psychological toll of caring for others. Short, structured reflective-writing exercises throughout the book create space to acknowledge tough experiences and feelings that may have been suppressed or unspoken, and begin examining them with greater self-compassion. Though written primarily for healthcare professionals, it reaches advocates, caregivers, and all who care for people in difficult circumstances.
The book gave me language for experiences, thoughts, and feelings I have struggled to articulate for years, and helped me bring things into conversation with my healthcare team. Doing so has significantly changed my mental health care, and for the first time, I feel that care slowly moving in the right direction.
In our One Rb World, we know timely diagnosis and treatment is vital to save life. We know what expert care involves. We know that more than 98% of children diagnosed in high-income countries are now cured. We know many children in low- and middle-income countries could survive too – if specialist care and support were accessible.
I know what ought to happen, yet too often I’m unable to deliver because of circumstances beyond my control. Every week I encounter families facing barriers created by geography, poverty, health systems, politics, conflict, lack of education, visas, transport – the simple fate of where a child lives.
Knowing what is possible while so often being part of what is not realistic is one of the heaviest elements of this work.
Over twenty years, hope has grown in remarkable ways. But as I hold my hope up to the sun and explore its brilliant, shimmering facets, I see its darker face too. The more light we bring, the more it reveals what still lies in shadow.
We have worked to increase awareness and knowledge. That has also meant answering desperate emails from parents whose children may already be running out of time.
We have connected families with expertise and practical support. That has also meant trying to solve access problems that too often have no solution within the realities of funding, healthcare systems, or human capacity.
We have helped advance treatment options, collaboration, and access to care. That has also meant witnessing preventable suffering, family breakdown, and the death of a child while knowing what might have been possible under different circumstances.
We have encouraged and empowered parents and survivors to become advocates for change. That has also meant carrying more stories of grief, courage, injustice, and hope than any one person can hold.
None of this diminishes our work – far from it. But we do ourselves a disservice if we only celebrate the hope we create without acknowledging the significant weight of carrying it forward.
Hope for the Hope-Bearers
In 2021, when we were all struggling through the COVID-19 pandemic, and I was newly-broken by the loss of my closest friend, I wrote several articles about self-care. Breathing for Wellness; The Gift of Listening to Ourselves; and Becoming Your Best Friend with Compassion, Care, and Love. I still believe every word, but I’m realising how easy it is to encourage others to do self-care and seek support without allowing myself the same grace.
Advocacy has a way of teaching us that everyone else’s needs are more urgent than our own. It takes over, one small decision at a time. One more patient, one more family, one more survivor, one more email. One more project commitment, conference sponsorship, or blog article (case-in-point here as I write late into the night). One more child… Until eventually we stop noticing that we have placed ourselves at the very bottom of the list.
I knew only my increasing fatigue, volatile emotions, and disconnection from the work in front of me. Understanding the cause has been a process.
Some people have commented on my quietness in our online community over recent years. Though mostly accumulated life beyond Rb and WE C Hope, I also recognised I no longer had the emotional capacity to respond to everything with good energy. Compassion, to remain genuine, cannot only flow in one direction.
While writing this article, plans for my own healthcare have been evolving. As I remember Rati, I am reminded of what it means to be the person receiving care rather than giving it. Rest doesn’t come easily in that place, but life sometimes insists we acknowledge the things we struggle most to accept: those who spend their lives caring for others also need care.
Pernille Axél Gregersen, M.D., Ph.D., Chief Physician at Aarhus University Hospital in Denmark, and Marissa D. Gonzalez, WE C Hope USA President and Rb survivor, share a moment of solidarity at One Rb World 2024.
Rati Still Teaches Me
Reflecting on these twenty years, it is the people I hold most dear. Rati and my father. The children whose lives we transformed, and those we could not save. Parents who have found the strength to support others while carrying gut-wrenching grief and anxiety for their own family, and survivors who use their experiences to improve life for future generations. Colleagues and mentors who have invested generously in me over many years,
They have all carried me. As has my commitment to Rati; my love for my father; and for my friends, teammates, and children we have lost along the way. Many times, those relationships have been my anchor, however much staying has hurt.
Love and hope combined ask a great deal of us, sometimes more than is healthy. In particular, they ask us to remain alive within the work, not just for it. I’m trying to discern the difference and how to do that well while protecting myself.
In 2004, Rati, Brenda Gallie, Morgan Livingstone, and Daisy’s family taught me to believe hope was worth pursuing for others. Twenty years after her death, Rati is teaching me that hope must include the advocate and caregiver. Caring doesn’t mean giving everything until nothing remains. Lasting advocacy requires us to keep something of ourselves too.
I used to think strength meant never stopping and being independent. Life is forcing me to concede that strength also means recognising when we need to pause, to receive help, and to rest – alone and in community. I’m still wrestling with this lesson!
Aberdare Country Club, Kenya, November 2007 | Morgan, Brenda, and Abby review a four-week tour of public, private, and mission hospitals treating children with Rb, and the pilot child life program. Connections made during that month led to the foundation of Kenya’s National Rb Strategy in the New Year.
Hope in Community
As we prepare to gather once again at One Rb World, I think this may be one of our most important conversations. Every year we discuss improving diagnosis, treatment, rehabilitation, research, and survivorship. We should – that dialogue saves lives. But we should also make space to ask how we sustain one another on our shared journey.
We are parents who never stop worrying. Survivors who carry lifelong consequences. Clinicians making impossible decisions. Nurses, child life specialists, and social workers who accompany families through devastating moments. Researchers who devote entire careers to finding better answers. Nonprofit leaders who carry the responsibility of an organisation, its programmes, and services. Advocates who answer one more email because we cannot bear the thought of someone in crisis.
Shared knowledge, understanding, and collaboration are vital, yes. But communities flourish because people show up for one another.
Twenty years ago, Rati inspired me to build hope where there was almost none. For too long, I’ve done so by giving hope away, and without realising it, I also gave too much of myself.
But to be sustainable, hope has to come home to all of us. To diagnosed children, their siblings, and parents. To survivors throughout life and their families. To clinicians, allied professionals, researchers, and advocates. And to me.
Hope is subjective – it will never look the same for everyone. Some will find it in healing, others in purpose. Maybe we greet hope with tears of relief having made it through another tough day. Whatever hope looks like for each of us, I believe the communities we build around it must also make room for the hope-bearers.
Rati has taught me again and again that hope thrives when people carry it together. Perhaps then, the greatest gift we can offer one another to advance our One Rb World is the support to keep carrying hope forward.
I’ll be joining the conference virtually this year, and I’m keen to see many of you online and in San Antonio. Until then, thank you for carrying the hope of Rati’s legacy with me over these past two decades. May we walk together well, in solidarity and shared hope, through the next twenty years!
One Rb World 2024 participants shared a wonderful Social Day of friendship, networking, and strengthening community before the conference began, including this fun bus tour of Honolulu. Here they are taking a break at the scenic Halona Blowhole stop.
Join One Rb World from Wherever You Are
If you’d like to join these conversations and our One Rb World community this year, virtual registration remains open until midnight CDT on Thursday, September 10.
Whether you’re a parent, survivor, clinician, researcher, student, or advocate, you’ll be part of our thriving global family for three days of education, collaboration, and connection. We’ll explore how we can improve care for every child, survivor, and family affected by retinoblastoma, and support one another in all we do.
Hear from world-leading experts and our international patient community, and discover practical ideas you can take back to your own family, clinic, organization, or advocacy work. No travel required. From wherever you are, join us with your curiosity, passion, and shared commitment to build a brighter future together..
See the list of our 2026 featured speakers.
Learn more about our 2026 program.
Conference Dates and Times
- Saturday, Sept 12, 2026: 9am-5pm Central Time (CT)
- Sunday, Sept 13, 2026: 9am-5pm Central Time (CT)
- Monday, Sept 14, 2026: 9am-12:45pm Central Time (CT)
Virtual Registration Details:
- High- or Upper-Middle-Income Countries: Individual $55 | Professional $160
- Low- or Lower-Middle-Income Countries: Individual $30 | Professional $80
Country income classifications are determined by the World Bank.
Wherever you are in the world, we hope you can join us at One Rb World this year!
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.
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