WE C Hope and Child Life: Bridging Gaps, Easing Trauma, Building Hope
Monday March 17, 2025
Child life helps families cope with retinoblastoma care, reducing trauma, and building hope. Yet access remains limited worldwide. March is Child Life Month and the birthday of our beloved Rati, whose brief life inspired World Eye Cancer Hope. From her care in Canada to Kenya, One Rb World and beyond, WE C Hope CEO, Abby White, explores how child life became central to our mission.
This medical play doll features a removable eye. He was specially designed to help children with retinoblastoma learn about eye-focused treatments, enucleation surgery, and prosthetic eyes.
Celebrating Rati and Child Life Month
Every child with cancer needs comfort, security, hope, and opportunities to thrive – even as procedure rooms and medical equipment become part of everyday life.
Child life helps children understand and cope with illness, injury, treatment, and life beyond hospital. March is Child Life Month, and March 17 marks the 23rd birthday of our beloved Rati, whose short life inspired our global mission and child life work.
To celebrate Rati and Child Life Month, we share the story of child life and World Eye Cancer Hope. Why we hold child life at our heart when focused on advancing retinoblastoma care, and how it has taken root in our outreach around the world.
Child Life: A Foundation Stone of WE C Hope
Daisy and Rati lived half a world apart, connected by the same daunting foe, retinoblastoma.
Daisy endured four years of treatment in England and Canada in efforts to overcome cancer in both eyes. Her family raised funds to meet the costs of her care at Toronto’s Hospital for Sick Children (SickKids).
In Africa, Rati’s delayed diagnosis of unilateral Rb and incomplete care threatened her life. Her mother emailed my personal website looking for help; I began calling Rb centres; and the SickKids team offered possible treatment. Keen to share the hope they received, Daisy’s family funded travel to Toronto for Rati and her mother, and a large part of her initial medical costs in Canada.
We established “Daisy’s Eye Cancer Fund” at this time in the UK and Canada. The organization you know today as World Eye Cancer Hope emerged from Daisy’s family embracing Rati’s family with friendship, care, and hope.
While in Toronto, Daisy met a wonderful Certified Child Life Specialist, Morgan Livingstone, who offered much-needed support for the whole family. Morgan used medical play and distraction to help Daisy understand and cope with procedures. Simple interventions gave her confidence and calm, and her parents felt more able to comfort her through stressful hospital visits.
Medical play helps Daisy prepare for another MRI.
Though the SickKids oncology program included child life, the ophthalmology program had no child life support. This remains the case twenty years later.
Morgan provides private child life consulting services, as well as working in hospital settings. When she heard about Rati, she immediately volunteered to help. Rati came to Canada with little English and high medical anxiety, but Morgan’s playful supports rapidly and radically improved her experiences.
Two weeks after arriving in Toronto, aged thirty-one months, Rati became the youngest patient at Princess Margaret Hospital to complete radiation mask making, CT scan setup, and her entire course of radiotherapy awake. How? Fun child life preparation focused on caterpillars, cocoons, butterflies, laying still, and talking about the benefits of being able to leave hospital soon after the procedure, compared with anaesthesia and recovery.
We don’t support young children enough to be active, calm, confident participants in their medical care.
Morgan and Rati showed me the power of well-prepared children and child-centred care. Child life has a profound effect on well-being for the whole family, and a critical role in all areas of paediatric medical care.
Rati’s cancer relapsed after a year in remission; we were all devastated when she died on August 21, 2006. She awakened us to the major gaps in retinoblastoma care across Africa and beyond, and her impact continues to grow.
Daisy and Rati affirmed the vital need for child life in Rb care. They sparked the Kenya National Rb Strategy, One Rb World, and the founding of WE C Hope USA. We educate, support families and survivors, and advocate for best practices to help everyone – wherever they live – receive life-saving holistic care. Child life was included from the beginning.
Rati’s first child life play session in Toronto.
Child Life in Kenya and Beyond
Children with retinoblastoma in low- and middle-income countries (LMICs) face profound challenges. Child life professionals are rare, and most families never meet anyone able to help them learn about and use child life skills to support their child. They must navigate late diagnoses, agonizing decisions, painful treatments, long separations, and end-of-life journeys with minimal or no psychosocial support.
In 2007, I travelled to Kenya with Rati’s ocular oncologist, Dr. Brenda Gallie, and Morgan, to gage interest in forming a national retinoblastoma strategy. Brenda and I had visited in 2006, my father was born in Kenya and diagnosed with bilateral Rb in Nairobi in 1946 – connections were growing fast.
During the month-long visit, Morgan led a pilot child life program at Nyanza Provincial Hospital in Kisumu (now Jaramogi Oginga Odinga Teaching & Referral Hospital). Medical play and self-expression activities enthralled the patients, and her brief hands-on training sessions attracted many interested doctors and nurses.
Morgan showed how developmentally appropriate play, procedure preparation, and a calm, child-centred environment help children cope better. They also improve safety, reduce the number of staff needed, and save money.
The seeds of this small pilot bloomed into Africa’s first formal child life training program – The Sally Test Child Life Program at Moi Teaching and Referral Hospital in Eldoret. Over time, and on a shoestring budget, the team has expanded in skill and size, with a comprehensive syllabus and international internship program.
Students receive intensive in-person training in Eldoret from Morgan every August, along with distance learning, regular assessments, and supervision,. Kenya’s earliest child life specialists now assist Morgan in local year-round training.
Eldoret’s child life team support children at Shoe4Africa Children’s Hospital. Child life specialists trained in Kenya also provide vital supports in Ghana, Malawi, and South Africa. They help families use simple coping strategies that empower them to feel confident in supporting their child.
Children are calmer and more trusting of medical staff. With less anxiety and more hope, child life helps heal body, mind, and spirit alongside the critical medical care.
Despite the clear benefits, funding for child life in LMICs has been a constant challenge. Psychosocial care is commonly viewed as a luxury when resources are limited and saving life is the priority. But without emotional support, the scars of medical trauma can last a lifetime – regardless of where in the world the child lives.
Morgan has often self-funded her annual travel and living expenses and training costs to ensure the program takes place. Her personal and professional dedication to our global retinoblastoma community is extraordinary.
Especially in low resource settings, child life helps families stay engaged in treatment, reduces fear and distress, and improves overall outcomes. Every investment in a child’s wellbeing through cancer is an investment in survival, resilience, and the family’s future.
Medical play helps this child learn about and prepare for a blood draw.
This glowing meteor shower toy provides a positive focus, helping the child stay calm and engaged during the procedure.
Remembering Jayne and Bella
Jayne Kamau was among the first to begin training in 2008, and became one of Africa’s first and most highly skilled child life specialists. She was a consummate advocate, helping caregivers navigate complex information and emotions to make informed decisions; supporting families through challenging procedures; and promoting the benefits of child life to healthcare decision-makers.
Like many of her colleagues, Jayne loved sharing the news of Child Life at medical meetings across Kenya and beyond. She and Child Life Specialist Liz Kabuthi were invited to present at the 13th African Congress of the International Society of Paediatric Oncology (SIOP), held in Cairo, Egypt on 6-9 March, 2019. Liz presented about the child life supports children with cancer experience at the Sally Test Child life program. Jayne presented the specific child life supports provided to young patients with retinoblastoma.
In response to their incredible advocacy, many African nations expressed interest in building their own child life programs. During the meeting, Liz and Jayne also worked intensively with our friend and Nairobi child life advocate, Bella Jaboma, who was to become our future child life intern from Hope for Cancer Kids charity.
After a highly successful conference spreading the word about child life supports for children with cancer, tragedy struck. Jayne and Bella died alongside Dr. Grace Kariuki when Ethiopian Airlines flight ET302 crashed shortly after take-off on March 10, 2019. They were much loved friends, dedicated members of our child life community, and passionate advocates for families living with childhood cancer. The void they leave is huge and their loss remains profound.
Alongside Liz, Jayne and Bella raised awareness at SIOP about how simple child-centred approaches, combined with local cultural understanding, can transform paediatric oncology care. All of us who knew and loved them carry forward their commitment to integrate holistic care for children across Africa and around the world.
Bella, presenting at SIOP in Cairo on supports for families of children with cancer.
Jayne, in Cairo with her poster on child life supports for babies and children with eye cancer.
Child Life in Action and Advocacy at One Rb World
Family-focused medical conferences and events offer great opportunity to expand child life awareness and access, share skills, and encourage conversation about child life in healthcare. One Rb World has become a key forum for this work in retinoblastoma care.
In October 2012, WE C Hope hosted the first One Rb World conference, uniting parents, survivors, medical professionals, and researchers from around the world to discuss challenges, solutions, and collaboration. Welcoming the whole family, we offered a program for children. Today, Child Life is a huge part of One Rb World.
London 2012
Retinoblastoma-survivor-primary school teachers, Jana Torkar and Steph Argyrakis, led two fabulous days of play and craft activities, and children shared relaxed conversation with others who understood their experiences.
Washington, D.C. 2017
Morgan and her child life interns organized a comprehensive three-day program. Among many fun activities, children created superhero masks, explored with medical play, and practiced giving eye drops to dolls.
Virtual 2020 and 2021
Child life sessions were included as part of the main program, allowing all attendees to observe play-based skill-building activities and supports. Parents said they appreciated playful, age-appropriate ways to help their children handle anaesthesia masks, blood draws, and eye exams.
Hawaii 2024
With 35 children, our largest child life program to date was packed with activities for all ages. Medical play included coping strategies for needle procedures, handling the removal and placement of a prosthetic eye, and anaesthesia. Mindfulness and self-expression activities helped young patients, survivors, and siblings talk about the big emotions they experience during cancer treatment and beyond.
By approaching these conversations through play, Morgan helped young children and teens open up about the challenges they face in life with retinoblastoma.
Alongside the One Rb World Child Life Program, child life has featured in the formal program at every meeting since 2017. Presentations and discussion highlight negative treatment impacts, the value of child-centred care, and practical action to reduce medical trauma for the whole family.
A party fit for princes and princesses at One Rb World 2024 in Hawaii.
Making and decorating clay prosthetic eyes at the Child Life Program, One Rb World 2024.
The Hawaii child life program and conference session were dedicated to WE C Hope USA Director, and Rb Mom, Lisa Hester. A huge child life advocate, Lisa planned to speak at One Rb World about how these strategies helped her son, Elijah. We were heartbroken when she died unexpectedly on July 31, 2024. In her memory, we continue to advocate for integration of child life into all areas of retinoblastoma patient care across the USA and worldwide.
Impact on Rb Care Practice
Families and medical professionals are learning about child life through One Rb World, and changing their approaches to care. A powerful example is Dr. Sandra Staffieri, Retinoblastoma Care Coordinator at the Royal Children’s Hospital (RCH) in Melbourne, Australia.
For years, Sandra helped schedule children’s exams under anaesthetic and coordinate their overall retinoblastoma management. But she rarely joined the first devastating conversations with parents facing a new diagnosis – she felt unsure of how to cope with their grief.
Attending One Rb World London in 2012 was Sandra’s turning point. She realized “just organizing the schedule” wasn’t enough. She began to understand the emotional toll of retinoblastoma, and that families need empathy and child-focused support from the entire care team.
She returned home determined to advocate for better psychosocial care of her patient families. Over time her learning and desire to adopt child life principles has grown. Today, Sandra proactively supports parents in those early, heartbreaking moments. She also champions child life therapy in the RCH ophthalmology program for fully child-centred, family-oriented care.
A Parent’s Perspective
Lisa Hester’s son, Elijah, was diagnosed with bilateral Rb at 7 weeks old. During and beyond treatment, he dreaded needles and sedation in particular. Through child life sessions at One Rb World 2017 and beyond, Lisa and Elijah learned practical ways to help him practice slow, deep breathing; choose fun distractions; and feel safe and supported. Shortly before his mother died, Elijah completed his first blood draw seamlessly, using these skills. Lisa wrote:
“Lunch date with this guy at Children’s Hospital (Pictured are Elijah and I at the CHLA cafeteria).
Poke is done, now waiting for his regular Hem./Onc. appointment.
@childlifemorgan brilliantly leads the charge to advocate for Child Life Services around the world!
In ways that are small, monumental, and everything in between, Child Life supports a child through treatment.
Today, Elijah knew to ask for the cold spray and the buzzy bee, and then he willingly did a blood draw that has…many times in our past, been a nightmare. He did it. Child life taught him that he could successfully navigate a hard thing (I’m sure getting older and stronger helped too!).
Just want to share my appreciation for things that have made a difficult road a little easier. And in this season, small things are big things.”
Lisa knew these victories in Elijah’s continuing Rb journey would come with practice, optimism, and Morgan’s guidance. She was keen to share her son’s experience and highlight that child life isn’t a luxury – it’s a vital need for children with Rb who have repeated, invasive procedures.
She wanted every medical professional working with Rb patients to know they have a powerful opportunity to integrate child life principles, transform the experience of their care, and support the child’s healthy development.
Lisa and Elijah celebrate his successful blood draw, when he used coping skills he learned through child life sessions and lots of playful practice at home.
Integrating Child Life into Retinoblastoma Care
Despite growing evidence of child life benefits – and impacts when it is absent, child life support for retinoblastoma remains elusive everywhere.
Even when child life services are available at the hospital, they often do not cover ophthalmology. Communication between paediatric and ocular oncology that does not address child life deepens the challenge.
Key barriers include:
- Expertise: ophthalmology is an uncommon sub-speciality of child life, as is working with oncology patients under two years old. Child life for retinoblastoma care involves a particularly skilled and dedicated professional.
- No Direct Oncology Involvement: When a child receives all care through ophthalmology, they are likely to have limited or no child life supports for procedures, and access to general child life services may be unclear.
- Limited Funding and Infrastructure: Even in high-income settings, sub-specialty program budgets rarely account for child life specialists outside oncology or surgical wards. In LMICs, the entire notion of specialized psychosocial support is often seen as an unattainable luxury.
- Early Age and Low Awareness: Retinoblastoma typically forms in children under three years old. Even in advanced hospitals, many people still believe these very young patients “won’t remember” or “aren’t old enough” to need child life. Research shows that infants store traumatic memory in their bodies, risking long-term anxiety or post-traumatic stress.
Parents’ voices vividly illustrate what happens when child life services are absent:
“We never had any support, and the result is a 19 year old with chronic PTSD from the pre-verbal trauma he suffered (active treatment from 5 weeks old to 22 months, EUAs until 5).”
“We had child life support once when we were in oncology for an office visit. Otherwise never. My 18 year old suffers from severe anxiety, PTSD and irritable bowel syndrome all due to this childhood trauma. I believe child life would have made this less of a traumatic experience.”
The cost of not providing child life can be devastating – for the child’s development, their family’s mental health, and the overall success of care.
#RbChildLife – Our 2025-2026 Campaign
In January, WE C Hope launched the #RbChildLife campaign, running to the end of 2026. Centred on our Alphabet of Hope, we’re highlighting simple approaches and vital supports that empower children and families, and help them thrive. Every four weeks, we introduce a new word, and a blog filled with information, techniques, stories, and advice to help families and professionals integrate child life concepts into retinoblastoma care.
For Child Life Month, we’re celebrating letter C, but our word isn’t “child life”! We’re leaning in to “Comfort Positions” – a powerful way to ease distress, ensuring safer, more supportive medical procedures for children, caregivers, and professionals.
Child life and psychosocial care is not optional in paediatric and ocular oncology. Through #RbChildLife, we empower you to advocate for holistic, family-centred support, and the best possible retinoblastoma care.
How to Get Involved
- Follow the Alphabet: Look for new letters shared every four weeks on our Facebook Page and Instagram.
- Join the Conversation: Add your voice to polls and quizzes, and share your own experiences as we explore each new mini-theme.
- Search and Spread the Word: Follow and repost with the hashtags #AlphabetOfHope and #RbChildLife to discover and talk about the latest content, and amplify the message.
- Dive Deeper: Explore each letter on our Alphabet of Hope page for blogs, videos, and other resources full of practical child life tools and advocacy tips you can use wherever you are. Find the page quickly at wechope.org/AlphabetOfHope
- Support Child Life Training: Consider donating to help us fund training, educational materials, child life programs at One Rb World, and advocacy for child life expansion worldwide. Donate to the Lisa Hester Child Life Memorial Fund.
Comfort Holds
What Can You Do?
Daisy, Rati, and countless children and survivors show us that treatment alone isn’t enough. A child’s emotional health and natural development are as important as their life-saving cancer therapies.
WE C Hope champions programs that meet both medical and psychosocial needs. We see every day how deeply children benefit when care is centred on them – their fears, questions, creative energy, and capacity for hope and healing.
As we celebrate Child Life Month and Rati’s birthday, we invite you to help us spread the word about child life.
- Rb Program: Parents, professionals, survivors, please encourage your retinoblastoma team to collaborate with child life specialists.
- Conversation: Talk with parents and colleagues about the role of child life in paediatric ophthalmology and oncology, and how it can enhance care.
- Skills: Explore our Child Life Resource and the Child Life Blog Category to discover and develop skills you can share with your child / patient families.
- #RbChildLife: Join our Alphabet of Hope campaign.
- Child Life Fund: Donate to help us fund training, resources, activities, and advocacy for child life expansion worldwide.
Together, we can ensure every child with retinoblastoma and their family has the emotional, social, and developmental support they need to heal – body, mind, and spirit, and to thrive long after treatment ends. Thank you for standing with us to make child life an essential part of childhood eye cancer care, everywhere.
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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