Daisy's Eye Cancer Fund USA

Retinoblastoma is the most common eye cancer in children, almost exclusively affecting babies and children under five years old. The most common early symptom is a white glow in the eye, seen in flash photos and dim light (see our profile picture). Though highly curable, 7,000 children die every year around the world, and 90% of children who survive have moderate, severe or complete loss of vision that is irreversible.

Increasing access to specialist care will bring the promise of life and sight to every child with retinoblastoma. This is the mission of Daisy's Eye Cancer Fund. We:

• Educate about retinoblastoma to achieve early diagnosis and rapid referral to specialist care;
• Empower medical teams to deliver sustainable high quality evidence-based care; and
• Enable family support programs that reduce burdens and improve access to essential care.

We employ four staff in Kenya. Currently all staff in Canada, the UK and USA are dedicated volunteers, most of whom are parents of children treated for retinoblastoma, adult survivors or both.

Our International Medical Director is Prof. Brenda Gallie, Director of the Retinoblastoma Program at Toronto's Hospital for Sick Children.

Daisy's Eye Cancer Fund is named in honour of a British girl who travelled to Canada for treatment in efforts to save her last seeing eye. When Daisy returned to England in 2004, Daisy's family donated money from The Daisy Fund to help Rati, a little girl from Africa whose cancer threatened her life. When Rati died in 2006, we began addressing the challenges that cause children in developing countries such great suffering. Daisy’s courage and wish to share hope helped Rati leave a legacy that has already saved many precious children, creating light from the darkness cancer brought to both their lives.

In 2012, we established Daisy's Eye Cancer Fund USA to begin addressing the many challenges American families encounter in the fight to save their child's life and sight. Our peer support groups are already enabling informed self-advocates and tackle the social isolation many families and survivors experience. We have also successfully advocated to reverse decisions that denied children access to expert care. Many challenges lie before us to secure excellent standards of care for all America’s children, but we are excited to be leading the way towards achieving that goal.

10 facts about retinoblastoma

1. 95% of children with retinoblastoma develop the cancer in the first two years of life, and it is present at birth in some babies.
2. Retinoblastoma can affect one or both eyes.
3. The most common early sign is a white glow in the child’s affected eye, seen in flash photos or in dim light. Treatment when this white glow is first seen is highly likely to cure.
4. Other symptoms include misaligned eyes; different coloured irises; a red, painful, swollen or watery eye without infection; and deteriorating vision.
5. Though 100% curable if contained in the eye at diagnosis, cancer quickly spreads to the brain or bone marrow if not promptly and expertly treated.
6. 7,000 children die every year from retinoblastoma that is diagnosed late or not managed correctly.
7. 90% of children who survive have moderate or severe irreversible loss of vision. 80% have one or both eyes surgically removed to save their life.
8. Treatments include chemotherapy, laser, cryotherapy (freezing therapy), brachytherapy (radioactive plaque), radiotherapy, enucleation (surgical removal of the eye), and bone marrow transplant (when cancer has spread far beyond the eye).
9. 90% of affected children live in developing countries, where access to specialist cancer care is limited.
10. The RB1 gene that causes retinoblastoma was the first cancer gene ever identified. Study of retinoblastoma and the RB1 gene has contributed fundamental knowledge about other cancers that affect millions of adults, and improved their treatment.