Canadian VHL Family Alliance


My husband John has a very rare genetic disease that two of my children also inherited. The disease is called Von Hippel-Lindau Disease, VHL for short. It basically means tumours in many different organs can occur. John right now has five brain tumours, three spinal cord tumors and several cysts on his pancreas. As well, he lost a kidney to cancer a few years ago. He has also already had three brain surgeries and probably within a year will have another.

Despite all that is going on, we decided to make our very small semi-bungalow bigger. With four children, 800 square feet on the main floor simply wasn't big enough. We both love the area we are in, so moving was out of the question. One Sunday afternoon we all got in the car and drove around taking pictures of houses we liked. We then designed one to our taste.

After the drawings were complete, I went downtown for the permit. The fellow who helped me asked how much we thought it would cost. I said my husband was doing most of it, so we figured around $40,000. He looked at me like I was nuts. He told me, if we had it contracted out, it would cost about $140,000. So I just said, you obviously don't know my husband. I could tell he still thought I was crazy. Well, I wish he could see our house now.

The only thing we paid someone to do was the pilings for the grade beam. We hired my cousin for a few days to help frame the roof and, right now, the stucco guys are finishing up. For different stages throughout we did have some family and friends helping, which was lots of fun.

John did the building, electrical, plumbing, heating, insulation, drywall and taping, painting, mouldings, installing windows, doors, etc. and much more. We've had all the required inspections, except for the very last, which is done when we are completely finished.

John is a millwright by trade, but when he puts his mind to something he can do anything. The inspectors have even complimented John on his work. I guess I just want to say how much I admire and respect my husband. He deserves this acknowledgement as he is very humble and unpretentious. How many people with five brain tumours (which makes for very poor balance) will climb up a ladder 30 feet or so? I've done a recent count and we've spent just about $40,000, with only a few things to go. It goes to show, if you put your mind to something, you can make it happen. Or maybe everybody needs a John Vander Vinne in their lives. We have a motto: Cherish yesterday, dream about tomorrow and live today!