In 2004, I was contacted
by a family in Botswana whose daughter had received a grave diagnosis
of recurrent retinoblastoma. In spite of dedicated efforts to help save
her life, little Rati died in August 2006, age 4.5yrs old. Her experience
led to the 2004 foundation of Daisy’s Eye Cancer Fund, an international
organisation dedicated to advocating optimal care for all children with
retinoblastoma around the world. We currently support a number of projects.
These include a worldwide tumour registry which will help us gather
epidemiological data and information about socio-economic factors affecting
access to and completion of therapy. In Chennai , India , our support
of the world’s first multi-centre clinical trial of chemotherapy
enables many children to access the same cutting edge therapies given
to children in Canada .
In 2005, I visited Nyanza Provincial Hospital in Kisumu with Rom Wandera,
to see how local children with retinoblastoma are cared for. The conditions
are basic, with no expertise, inconsistent supply of chemotherapy drugs,
and immune compromised children sharing beds in two cramped rooms. Following
this visit, we initiated “Rati’s Challenge”, to specifically
address the challenges of caring for children with retinoblastoma in
Africa . We are currently working with doctors across Kenya on he development
of a national diagnosis and treatment program in the country, that will
be capable of serving the wider East Africa region. We hope this will
eventually become a model program that can be adapted for use in many
other countries.
To learn more about the signs of retinoblastoma and the work of Daisy’s
Eye Cancer Fund, please visit our website at www.daisyseyecancerfund.org
.
