Hello! I am Anna, mum to Ryley. We live in Australia. Ryley is 8 years old. Many of you will have come across me at some stage! We first started a blog in 2005, which got lost, and we have had our current blog for just on a year now!
You can find our blog here: A Blog About a Bloke-Living with WHS .
Unlike most families, Ryley’s WHS is the result of inheriting part of my balanced translocation. So, I have a balanced translocation of chromsomes 4 and 8. We didn’t know this until he was finally diagnosed when he was 2 years old.
Our second son Braeden (2 years old) has inherited the balanced translocation from me, so is neurotypical, but will have the same risks as me when it comes to reproducing.
Ryley started walking at the age of 7 years old which was amazing! He is non-verbal, but a strong communicator. He has seizures everyday, and is currently on two medications as well as the Ketogenic Diet. He is completely PEG (g-tube) fed now. He didn’t get the g-tube until he was 6 and 1/2 years old.
We are hosting the next Australian Support Group conference in 2011 and are very excited about that!
What a great idea this blog is and how wonderful to see so many people already on here!!
Ryley is our heart and soul. We love him to bits and feel so lucky to have him in our lives.
Anna
Hi Anna! Great post. Thank you for joining. Please keep us posted on Ryley. If you need to work on a way to post in 2 locations, let me know. I’m working on looking for a tool that can post simultaneously in 2 places.
I have read “A blog about a Bloke” and loved it. Ryley is so cute.