I’m relieved to say that Harry had his test dose again this week in Barcelona and it was a lot calmer than the last time, and so was I thanks to a good friend with me (Julie). Harry slept before from the pre-medication and after, and would have slept during if they hadn’t needed him awake to say if he felt anything not right! Harry was and is amazing, he was completely accepting of the treatment again and continues to take his many daily medications without fuss. We have had a very quiet few days since as he has been tired but that’s not a bad thing for either of us. We did manage to get out for a yummy BBQ lunch with my boss/friend Ian and his lovely family yesterday which we both enjoyed.

Harry is pretty exhausted still and complains of little aches and pains which worry me every day, but he has been through so much I have to remember how well he is doing in comparison to some others we have met or heard of along our journey. Harry is strong. There does need to be more done though and kinder and less harmful treatments found, to help our children fight this disease. I would love to think that we can in some small way help that happen.

Thank you all, Nina x 💙💛