Welcome

The background of founding Stichting Semmy

Stichting Semmy was founded following the death of our son Semmy.

On July 19th 2006, our son Semmy, at the age of four, was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) - a cancerous brain tumor.

This type of tumor is located in the brain stem, at the base of the brain. Affecting primarily children, it is the rarest and worst of pediatric brain tumors. Approximately 200 children in the US, 40 children in the UK, and 15 - 18 children in the Netherlands, are diagnosed each year. This type of tumor is considered terminal (the survival rate is close to 0%) and survival time is typically two to twelve months following diagnosis.

At the time, as parents, we felt an overwhelming sense of helplessness when learning there was nothing the doctors could do to save Semmy's life.
In 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 22nd 2007, eleven months after diagnosis, at the age of five.

Great despair and frustration lead us on a mission to help children and families suffering from DIPG, while raising awareness and money to finance research that will lead to a cure for this awful type of pediatric brain cancer.

The goals of the Semmy Foundation are:

• Raising the funding of research to increase the life expectancy and in the long run the survival rate of children diagnosed with brain stem cancer

• Increasing global awareness, not only of pediatric brain stem tumors but also of the lack of funding allocated for pediatric brain cancer research

Ambassador Prof. Dr. G.J. Kaspers

The ambassador for Stichting Semmy, Prof. Dr. G.J. Kaspers (head of pediatric oncology and hematology at the VUmc), stresses the importance of Stichting Semmy below:

"Carrying out research about tumors of the brain stem is highly necessary and offers the only possibility to improve the current very poor prognosis for children with this form of pediatric cancer."

Welcome at the website of pontineglioma.com

This website is currently under construction.

Your can already read the whole story, in Dutch, on www.stichtingsemmy.nl