Since the article in the Vancouver Sun has come out, I have had the opportunity to speak with quite a few more parents whose children have MPS II, and many more whose children are “intellectually intact.” What I have found so interesting about these conversations are that across the table, with no exceptions, these parents were told their children were severely affected and would die in their teens or before, with brain involvement. All of these children had developmental delays and one of the moms even noted aggressive behaviors in her children with Hunter’s. It was around the age of five that these moms noticed their boys coming out of their shells. Until then, they were having some trouble. And now they are in school and doing very very well. Now if there’s a reason to believe… (although I am wondering about the doctors who have given these diagnoses. It’s one thing to prepare parents for possibility. It’s another to completely devastate them and destroy all hope, when all hope is not gone).
And still more great news. Trey’s shoulders are doing well (his physio, Jane, was here today). His range of motion has increased. His elbows and achilles tendons are still a bit tight, but the ERT should help this. Pretty great news. Lots of love, Deb
PS. Above is a picture of Trey’s new cat, Boo!