Tuesday, October 26, 2010

Batten Disease

This is an amazing clip of Bryce's journey. I first came across Bryce and his Mum Lorraine through a parenting website I visit. Batten Disease is just devastating for families. When we lived in Toowoomba, a family from our church had their (only) two sons die from this condition. It's rare, so it's difficult to attract funds for research to develop a cure.
Bryce's birthday is exactly the same as Aidan's, except that Bryce is one year older. I can't even begin to imagine what it must have been like to think that everything was normal and then discover my child had a fatal disease. I think of his family often and although I don't think they are Christians, I pray for them too.


Wendy said...

Did you really go to St Johns in Toowoomba? That is where we were married! I'm a Twmba girl!

Karen, Can I email you privately? I have an OT issue that I could use some help with.

Wendy said...

But I should also have said, Yes, this disease is devastating. So tragic, especially if they have no eternal hope.

Karen said...

Yes we did!! St John's was our home church when we lived there (we were there for two years all up). We actually got married in Toowoomba too, but not in the church (although we did have their minister - David Secomb at the time). We went to the Queen's Park Gardens to get married because it was Carnival of Flowers time...heaps of tulips too, obviously!
Loved living there but we just loved the beach/coastal regions a bit more.
I will send you an email since my email address isn't on my profile, then we can go from there. My brain's not so sharp on OT stuff at the moment, but happy to help if I can...