From One Child to One Rb World: Our Foundation Story
Monday March 4, 2024
Daisy’s Eye Cancer Fund (now World Eye Cancer Hope) evolved from the generosity of one family sharing hope with another at opposite ends of the earth, creating light within the darkness that retinoblastoma brought to their lives. Rb Survivor and Daisy Fund co-founder, Abby White, shares Rati’s story, and how her experience led to our hope-building work today.
Diagnosis and Surgery
On March 17, 2002, a precious little girl was born, bringing great joy to her parents and three older sisters. Her name, Gorata, means “to love” in Setswana, the national language of her homeland, Botswana. Her family nicknamed her “Rati”.
When Rati was five months old, her parents, John and Salome, noticed her eye glowed white in the early morning and late evening. Concerned, they took her to the local hospital, where doctors reassured them she was fine.
Unconvinced, they continued to ask questions. Four months later, they learned their daughter had unilateral retinoblastoma and that her eye must be removed urgently to save her life.
Sounds familiar, doesn’t it? Lack of awareness delays diagnosis and treatment. But Rati finally had a diagnosis and treatment plan, so she would surely be fine, right?
Sadly not. Despite Botswana’s diamond mining wealth, the public healthcare system was overwhelmed by high HIV infection, inequity in access to care, and the effects of low investment in training and infrastructure. Rati’s parents took her to neighbouring South Africa for the diagnosis, but could not afford treatment there. Enucleation surgery was finally done in her home town two months later, when she was 11 months old.
Though South African doctors recommended post-surgery chemotherapy, and drugs were available in Botswana, local doctors concluded the surgery alone had cured her. Rati was discharged two months later, after just one follow up appointment. She did not receive an artificial eye.
A Life Threatening Relapse and Hands of Hope
Nineteen months later, Rati’s enucleated socket became red and swollen. Doctors told her devastated parents the cancer had returned and there was no hope for cure. Determined to find care, they turned to the internet for help.
At that time, I had a simple website providing basic information and resource links for families affected by retinoblastoma – I’d created it exactly one year earlier; a coping distraction from deep personal trauma. On September 29th 2004, I received a four-line email from Rati’s mother through the feedback form. She asked only for information, advice, and prayer.
I responded with contact details of a doctor in Zimbabwe who I knew had experience caring for children with advanced Rb. But I didn’t feel I could say I was praying if I did not also try to help.
So I began cold-calling hospitals in England and around the world…
St Jude Children’s Research Hospital could not accept Rati for care due to her prior treatment and the lack of both pathology and clear imaging. However, conversation with her surgeon in Botswana at a critical time spared her from orbital exenteration. This radical, painful surgery, removing all orbital bones and tissues, is ineffective in curing retinoblastoma.
Matthew Wilson MD, ocular oncologist at St Jude, had tried repeatedly to connect with Rati’s surgeon in the preceding days. In the small hours of a Memphis morning, his call was finally answered – minutes before surgery was due to begin.
Only Memorial Sloan Kettering Cancer Center in NYC and Toronto’s Hospital for Sick Children (SickKids) offered treatment. MSKCC required $360,000 on account before they could accept Rati, so this option was quickly eliminated. SickKids offered to help, if we could get Rati to Canada.
Daisy Lloyd had recently returned to England following treatment at SickKids. Her parents pledged money remaining in her treatment fund, to cover flights and part of the $25,000 initial hospital bill. With this gift, we founded Daisy’s Eye Cancer Fund in the UK and Canada to fundraise for Rati’s care. Three weeks after the first email, I walked into SickKids with Rati and her mother.
Rati before and during treatment in Canada.
The Best Last Chance of Cure
Tests showed the cancer had spread into Rati’s brain and cerebrospinal fluid (CSF – fluid bathing the brain). However, her doctors felt there was a chance of saving her life, and she deserved the same opportunity as any Canadian child.
Rati received a new eye during her first week in Toronto. She was enthralled, and delighted in looking and smiling at herself in any mirrored surface. During the second week, she began 6 rounds of chemotherapy, five weeks of radiotherapy, and weekly chemo injected directly into her cerebrospinal fluid.
In January 2005, molecular analysis compared CSF samples against a sample of Rati’s tumour. These tests and MRI found no trace of cancer.
Rati could proceed to a stem cell transplant In April 2005. Stem cells were removed from her blood, through a process similar to dialysis, and stored while she received very high doses of chemotherapy.
These drugs would hopefully destroy any undetected cancer cells, but they would also destroy Rati’s bone marrow (the “blood cell factory”). Following three days of super-high-dose chemotherapy, the stem cells were returned to her to “rescue” her bone marrow.
A Brilliant Birthday Surprise
I was determined to reunite Rati’s family in time for her third birthday and the transplant. In March 2005, after nearly six months of perseverance, I secured donated flights from South African Airways for Rati’s father and three sisters to join her in Toronto. Their arrival in Canada was truly a miracle!
The donation was confirmed just four days before the actual flights, despite my request for at least two weeks’ notice. We could not arrange onward travel to Canada until the Johannesburg – New York flights were booked, and the US embassy would not issue visas without onward flight to Canada.
Once Angel Fight NE confirmed their mission flight across the border, John scrambled to secure US transit visas in Gaborone. The family lived six hours drive from the capital city, and 11 hours drive from Tambo airport in Johannesburg. Their visa application was denied as John had attached regular passport booth photos, not realising the difference in stipulated photo size. The flights I worked so hard to secure would be lost if documents were not granted the next day – a non-issuing day at the US embassy.
Visas were issued only after feverish networking overnight directly to the US Ambassador in Botswana, thanks to my former housemate and her mother who called on her Washington D.C. contacts for help. Families and charity workers seldom have connections like this, and I will be forever thankful to Phoebe, her mother, and all who contributed to reuniting Rati’s family at such a critical time in her care.
The US transit visas stipulated that the family must be met at JFK by a named sponsor, and escorted to the Canadian border – such paranoia that they would prefer to disappear in America rather than reunite with their precious Rati. So I met John and the girls in New York, right at the door of their plane – where they were the first to disembark. I was able to immediately give them winter clothes donated by well-wishers from our New York Rb community. Two wonderful Angel Flight NE pilots flew us from JFK’s private terminal to Toronto’s Island Airport, four days before Rati’s 3rd birthday!
I don’t know how the walls of the Ronald McDonald House kitchen didn’t burst apart to accommodate the joy of that reunion. Salome and Rati had no idea their family were coming – I hadn’t wanted to set them up for heartache, so I simply did not tell them. Salome hugged all her girls and shared a long lingering embrace with John.
Rati, who had been asleep, sat on the sofa in the family area for a full minute, transfixed by the scene before her. Perhaps she thought she was still dreaming. She didn’t know who to hug first, but her sisters surrounded her with love and kisses. There was so much joy in those precious moments of a divided family becoming one again. No one had dry eyes.
The following month, Rati sailed through her transplant. She was doing very well, with no signs of cancer; we had great hope for her future.
Rati’s family reunited in Canada.
Child Life Support
On their second day in Toronto, Rati, her mother and I met Morgan Livingstone CCLS, a wonderful child life specialist who had supported Daisy through treatment. Morgan became instrumental in Rati’s medical care, helping her understand what was happening, prepare for procedures, and be an active, engaged participant in her care.
Doctors in Botswana had been unable to gain any useful CT scan images of Rati’s eye or brain because she could not lay still, and anaesthesia was not available. Just one month later, Rati completed mask making for radiotherapy and CT simulation after just 30 minutes of child life preparation with Morgan. Rati enjoyed thinking about caterpillars lying very still in their cocoon as they transform into a beautiful butterfly – imagining the scanner to be the cocoon, and her the transforming butterfly.
Young children are usually anaesthetised for each daily radiotherapy treatment to ensure they lie still. Rati went on to complete all 25 days of radiotherapy awake, becoming the youngest child to do so at Princess Margaret Hospital. Even at two and a half years old, she understood that if she could lay still, she would be able to leave right away and do something fun, while anaesthesia would involve a mask and needles, feeling sick afterwards, and more time in hospital.
Rati showed that given the opportunity, very young children are capable of clear reasoning and making good choices for their own wellbeing. Too often, we don’t give them that chance or the professional supports to empower them to be their own advocates.
Morgan’s transformative work with Rati, Daisy, and other retinoblastoma patients inspired us to include child life work wherever possible in future activities.
Child life specialist, Morgan Livingstone helps Rati learn about the medical procedures and equipment she will encounter during her cancer care, while also giving support tips to her mother, Salome.
Gaining Her Wings
After the transplant Rati’s weekly intrathecal chemotherapy would continue for one year. All her tests in December 2005 remained clear, and we began planning follow-up care for her return to Botswana in April 2006.
At the end of January 2006, I received a 1am call from Dr. Gallie – I knew the news was bad. Rati had suffered a seizure, prompting an emergency CT scan – after a year in remission, the cancer had come back throughout the lining of her brain. Cure was no longer possible. We were all devastated.
We continued to care for Rati and her family, creating special memories with a weekend at Niagara Falls and a week-long wish trip to Disney World – Rati’s wish was “to meet Winnie the Pooh with Auntie Abby”. During that week in Florida, fellow Rb Survivor and Bradenton resident Louise Shuman arranged an overnight visit to a condo right on the beach at Ana Maria Island – Rati’s first and only experience of the ocean. I hold dear the memory of Rati and her entire family holding hands and dancing among glittering surf at sunset,
We celebrated her 4th birthday with a special meal at the Ethiopian House – the very first place Rati had eaten out after her arrival in Toronto in 2004. Rati had a way of bringing people together – more than 40 people shared that celebration, including friends and staff from the RMH, SickKids medical team, and international patient office.
Rati died on Monday 21 August 2006, surrounded by her family.
In those heartbreaking days, none of us anticipated how much Rati would continue to change our lives, and the lives of children not yet born.
Rati relaxes in the sun at Give Kids The World, Florida.
The Seeds of Rati’s Legacy
Dr. Gallie and I talked frequently during Rati’s care about the challenges of bringing a child to another country for treatment. The cost and logistics make this very difficult. So many people sent toys to Rati, the pile became ridiculous, but raising funds for her treatment was painfully hard.
Most people assumed the hospital would donate everything, or some magic fund would cover the cost. Sadly this is not the reality, and for every child we know about like Rati who reaches expert care in a developed country, thousands have no chance.
Through the dedication of many people, Rati had the best last chance possible, but expert care came too late. Multiple opportunities to save her life in Africa were missed, and her death was preventable. She taught us to see, hear and understand the needs of families like hers, and she challenged us to tackle the issues that caused her to die, so that other children will be saved.
In November 2006, Dr. Gallie joined me in Kenya for a week to investigate the possibilities. My father was born in Kenya, and diagnosed with bilateral Rb in Nairobi in 1946. 25% of sub-Saharan Africa’s ophthalmologists train in Kenya This seemed a good place to begin.
We visited a family in their very rural village whose child had Rb, and Brenda presented on retinoblastoma at Nyanza Provincial Hospital – a very interactive session, well-attended by doctors from across the city’s public, private and mission hospitals.
We held a simple community awareness event, inviting the public to a free meal following a presentation about Rb, at which several affected families shared their story. The meal was prepared by women from the Credit Union Co-operative I helped to establish in 1998, while working in Kisumu during a gap year between undergrad and postgrad studies.
Shortly after our return from Africa, I was invited to attend One World, One Vision, a unique symposium hosted in January 2007 by St Jude Children’s Research Hospital. Multidisciplinary clinicians and researchers from around the world united to explore the challenges and practical solutions to improve outcomes in developing countries.
The meeting focused on early diagnosis and development of retinoblastoma specialist programs, highlighting the role of partnership between Rb centres in high-income countries and low/middle-income countries. Sessions also emphasised the importance of collaboration with non-profit organizations to advance early detection, treatment provision, and access to care.
This meeting accelerated my own learning about global retinoblastoma, and cemented my desire to make a lasting difference in Rati’s memory.
Brenda Gallie and I returned to Kenya for a month in November 2007, together with Morgan Livingstone. We visited every major hospital in the country (public, mission and private) that treats retinoblastoma, and Morgan led a pilot program of child life supports and training at Nyanza Provincial Hospital in Kisumu. The Kenya National Retinoblastoma Strategy emerged from that visit, and was officially launched in September 2008.
And so we began to evolve from one child towards World Eye Cancer Hope and One Rb World!
In 2006, we visited the village of Sango Rota, about 1.5hrs drive from Kisumu in Western Kenya, to meet Rb patient, Linda, and her family. Many villagers were keen to learn about Linda’s cancer, and how children could be diagnosed and treated sooner. Wherever we went, this was our experience – parents wanted the knowledge and care access to advocate for their children’s health.
Read Part 2!
Discover how Rati inspired international collaboration, One Rb World, and the foundation of our US chapter for American families and survivors…
Part 2: From One Child to One Rb World: WE C Hope for Retinoblastoma Care
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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