Hi: First of all my name is Richard my son’s name is Jessie he’s 18 . We are a team ! Jessie has Alport… AVF Oct 30/06 … very close to dialysis. For year’s I’ve seen this coming , knowing the nature of the beast (Alport’s), but for most of the time I kept it to myself. Now the cat’s out of the bag.
We are Canadians (Sudbury Ontario) , north of Toronto and the heart and soul of Nocturnal Haemodialysis,Humber River, and Andreas Pierratos to whom weare in contact.A person Ive been talking with John Agar (Geelong)suggested I come here if I need advise or if Jess or I needed to talk .
Before I started this thread I took a look at the members list… Hell of a lot of exsperience, “I’m sorry to say”. Ive been to this site before but never the message board.
For now… I’m wondering if thier are not other person from my area who may be at this site who may be in the same situation as us. Like I mentioned we are about 350-400 clicks from Humber. I want and so does Jess to have him on Nocturnal Hemo but because we are out of the 300 mile radius he may not be allowed. To this I say &%$#&%$#@ right now I’m after our goverment, Mpp, and everyone I can think of . Jessie’s dr. has been trying for years to set up a clinic or unit as they have down south, but like he say’s run around run around. He is all in favour of Jessie on nocturnal he knows the benifits supercede all. I’ve been firing off e-mails and letters left and right,no answers as of yet … Next stop the media… We will see… so like I said if your out thier drop me a note. Thanks