Christian has made much progress since been reinstated on ERT. He has started saying a few more words. Even though he still can’t hear well and refuses to wear his hearing aids he understands much of what you say to him. During the school holidays I persevered with his toilet training and it took two weeks for him to get it right. For the first time this week he went to school without a nappy. His teachers were skeptical at the start but now very happy to report he had no accidents today. This is a big milestone he has achieved and we just want to keep giving him the best chance at success.
In this video clip he had just finished receiving ERT and is being de-accessed. Video quality not so good