Prayers on your way

Grandpa, he is a cutie. Give him a hug from me.

I'd like to think my children would be able to make the same gut-wrenching decision as your brave Kathryn. Give her a hug from me, as well.

My prayers are with you and yours.

The trip to the specialist hasn't happened yet.

We're noticing more this time because we're on the lookout for it.
His head is not moving as it should and his hands are in the 'back to back' position. He dosen't kick his legs like he should, but he's got a louder yell on him than Jake ever had!!!!!!

Kathryn is staying at our place with him until Paul can give up smoking, which he's finding very difficult at the moment because of all the stress.

Thanks mate

Kathryn. Paul and Toby went up to the Royal Brompton Hospital today. (I'm waiting for them to get back).
Toby has been accepted by them. I don't know all the details as yet, but they will be supplying things like a Bipap machine to help him breathe, and a Cough assist machine.

He dosen't need them yet, but he will do as his muscles get weaker.

Thes machines are non invasive, and will enable him to live at home.

I have been told they have a patient with SMA (Type 1) who is 4 years old.