Last fall our seven-year-old son was diagnosed with a retinal hemangioma. We were told that he might have von Hippel-Lindau disease. He has since had the hemangioma treated by laser surgery. Four weeks ago a blood sample was drawn and sent to Philadelphia. We learned today that the laboratory found no sign of the VHL genetic flaw.

I write this letter to you and enclose a small contribution to say how much we appreciated your web page. I also enclose a check from my mother who shares our support for the work you are doing. I can say without hesitation that your web site gave my family all the information we needed and answered all of our questions. The information both enlightened me and through greater knowledge comforted my wife and me. The information helped us make more informed decisions on how to proceed with the treatment of our son’s condition, and whether we should use genetic testing.

We are much relieved that it is almost certain that my son does not have VHL. However, for the short time between discovery of the hemangioma and the receipt of the test results, I think we experienced a little of what many families have gone through who have dealt with VHL. My heart goes out to everyone affected by VHL. It has been a long four months.

We hope this small donation can be used to support your work and we pray for the continued progress in finding a cure for this disease. Thank you!

-- Frank R., Wisconsin

As printed in the VHL Family Forum 8:2, June 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory, differential diagnosis, ruling out VHL