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The background of founding Stichting Semmy
On July 19, 2006, our son Semmy, at age four, was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) - a cancerous brain tumor.
This type of tumor is located in the brainstem, at the base of the brain.
Affecting primarily children, it is the rarest and worst of pediatric brain tumors.
Approximately 200 children in the USA, 40 children in the UK, 15 - 18 children in the Netherlands, are diagnosed each year.
This type of tumor is considered terminal (survival rate is close to 0%), and survival time is typically two to twelve months following diagnosis.
At the time we as parents, felt an overwhelming sense of helplessness when learning there was nothing the doctors could do to save Semmy s life.
The months after the diagnosis, radiation therapy was applied and Semmy s condition improved.
We shared beautiful moments and Semmy was able to attend school again on good days. Unfortunately in February 2007, the situation reversed and the tumor started to grow again.
Semmy passed away on June 22, 2007 eleven months after diagnosis, at the age of five years.
Great despair and frustration lead us on a mission to help children and families suffering from DIPG,
while raising awareness and money to finance studies that will lead to a cure for this awful type of pediatric brain cancer.
The goal of the Semmy Foundation is:
- The funding of research to increase the life expectancy and in the long run the survival rate of children diagnosed with brain stem cancer
- Promoting a global awareness of not only pediatric brainstem tumors, but also an awareness of the lack of funding allocated for pediatric brain cancer research.
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