Raul's Story: Son gave him courage

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Raul is a dedicated doctor in Israel and was devastated when his son Asaf, then aged 10, was diagnosed as having Gauchers disease. After a year of treatment, Raul could not feel his son's spleen and his liver had also shrunk in size. Raul tells his story:

I knew nothing about Gauchers disease despite being a doctor. I think I must have covered it in my first year of medical training but all I remembered when Asaf was first diagnosed was that either the patient died or was asymptomatic (had no symptoms). Fortunately I was wrong.

We were lucky that the GP who saw Asaf recognised Gauchers, especially as I was his boss! He sent Asaf for tests. We ended up at the Shaare Zedek Hospital in Jerusalem and saw Dr Zimran. I thought the tests would be short but they took the whole day. Asaf was very thoroughly examined.

It is difficult being both a father and a doctor. On the one side I have to be an objective doctor but I am also a caring and anxious parent. I resolved the problem by talking about it with my wife Anna, Asaf and my other two children. I also became active in the support group.

Asaf was always very courageous and I have taken my courage from him. He is much better now although he is still a little anaemic. He has been on Ceredase treatment for 18 months, the last 5 months on Cerezyme. His spleen is nearly normal; it had been very large. His liver has also decreased in size. He will be 13 in November.

Source: Gauchers News September 1995
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