| ORPHANS OF THE CANCER STORM |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
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| Four-year-old Gorata (Rati) was born in Francistown, Botswana, on March 17th, 2002. At the tender age of five months, Rati's parents, John and Salome, took her to their local hospital with concerns about her left eye. Although doctors suspected eye cancer at the time, delays in referral meant she was not seen by a paediatric ophthalmologist for another four months, and treatment was not initiated until she was 11 months old. |
| Please help us honour the thousands of children with Rb like Daisy and Rati, who face blindness and death because they do not have access to the care they need, when they need it. Make a donation to Daisy's Eye Cancer Fund today, and help us change children's lives. |
| I received an email from them on September 29th, 2004, and enlisted the help of doctors at St Jude Children's Research Hospital in Memphis, USA. Together, we were able to lobby the doctors in Africa to abandon the surgery. However, St Jude was unable to offer treatment in Memphis, due to the unique way in which the hospital operates. I began sending out emails and making telephone calls to the Rb community around the world, eventually receiving a positive response from the Hospital for Sick Children in Toronto, Canada. The parents of Daisy Lloyd, an English child treated in Canada, funded flights for Rati and her mother to Canada, and I flew into the city with them less than four weeks after the initial email. Tests revealed that Rati's tumour had already invaded her brain and cerebro-spinal fluid, but Dr Brenda Gallie (ophthalmologist) and Dr Helen Chan (oncologist) felt there was a chance of cure, and agreed to initiate treatment. Over the next five weeks, Rati underwent daily cranial radiation. At the same time, she began a six cycle course of chemotherapy, plus weekly doses of chemotherapy injected directly into her cerebro-spinal fluid. By the end of January, she was in remission, and we all began to have hope for her future. |
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| In March 2005, just in time for Rati's 3rd birthday, South African Airways and Angel Flight of New England donated flights which enables us to reunite Rati and her mother with her father and three sisters in Toronto - they had been seperated for five long months.. The family lived together in one room at Toronto's Ronald McDonald House, where the girls attended school and quietly waited for their little sister's treatment to end. |
| In April 2005, Rati underwent an autologious stem cell transplant to consolidate her treatment and ensure, as far as possible, that the cancer would never recur. After the transplant, and 5 weeks in hospital, Rati was realeased back to the Ronald McDonald House, but continued to visit the hospital weekly for intrathecal chemotherapy. Throughout her treatments, Rati remained extremely well. She enjoyed many wonderful activities and met some international celebrities, including tennis star Serena Williams. She took part in craft activities at the Ronald McDonald House and attended church weekly with her family. Rati's progress appeared to be cause for great encouragement. So everyone was demolished when a sudden seizure and subsequent CT scan revealed extensive recurrence in January 2006. At this point, no further treatment was possible, and Rati's parents, together with the doctors, agreed to stop chemotherapy. |
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| Rati celebrated her 4th birthday in March 2006, with a special dinner at Toronto's Ethiopian House Restaurant. During the evening, Dr Gallie presented her with a certificate which named her as the first World Rb citizen, in recognition of the huge contribution she has made to improving the lives of children with Rb around the world. |
| Daisy's Eye Cancer Fund This charity was founded in late 2004, to fundraise for Rati's treatment costs. The fund is named after Daisy Lloyd, who also travelled to Sick Kids in Canada, after all treatment options in England failed. The mission of the charity has since been expanded to support all children around the wolrd affected by retinoblastoma. A number of projects have been initiated, with the ultimate goal that, one day, no child will have to face death from this 100% curable cancer, because of late diagnosis, lack of acces to treatment, or inapropriate medical care. |
| Rati's Story 17 March 2002-21 August 2006 Rati's story is told by her "Aunty Abby". |
| Somewhere By Israel Kamakawiwo'ole |
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| Two months before treatment was initiated, doctors in Johannesburg, South Africa. recommended immediate removal of Rati's left eye, and a course of post-operative chemotherapy, as an ultrasound scan suggested spread of the tumour to the sclera (the outer lining of the eye). However, no chemotherapy was given, and Rati was only seen twice in the hospital following surgery. She also never received an implant or artificial eye. |
| 19 months later, Rati's parents noticed a growth in their daughter's eye socket. They took her back to the hospital, where she was diagnosed with a recurrence of the cancer - a recurrence that would most likely not have happened, had she received the recommended chemotherapy after surgery. Doctors planned a radical surgery, to remove the orbital bones around the affected eye. This greatly disturbed Rati's parents, who turned to the internet for help. |
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| Rati and her family continued to cherish every moment together, a highlight being the granting of Rati's wish to meet Winnie the Pooh, theanks to the Make A Wish Foundation. This was a magical trip to Disney World, Sea World, Give Kids The World and Anna Maria Island in Florida. As the summer began to age, so Rati also become more tired. She slipped away from this world on the morning of Monday August 21st, 2006. She is now free, dancing and rejoicing with God and the angels. Please keep her family in your thoughts and prayers as they reflect on her life, and prepare to more forward without her. |