Last year Kade had improved remarkably with regular ivig, physically and mentally he was functioning, moving forwards towards his goal of getting better. Ask anyone who knows him on a personal level, they'll tell you he was chatty, calm, relaxed, achieving, brighter and lighter in himself. His walking had improved so much he no longer … Continue reading Down the rabbit hole

We are half way through May, Kade has continued to decline health wise since his set back in January 2017. A lot has happened since then, we have been to London to see a team of doctors to discuss how to move forward. I have the hopeless gut niggling feeling that the plan for Kade … Continue reading Tick tock

Another early morning, when you have a chronically ill child you do not truely sleep. When you wake its like waking from a nightmare however there is not that relief, in that split second where you would have that realisation that it was only a dream, it is the opposite. The reality hits you again, … Continue reading The only way

When your body attacks your brain how does it feel. I do not know. All I can do is watch the effects unravel before my eyes. It's been 4 weeks since Kade has attended school. He has just left in his taxi. My heart aches that he will not see one person today that truely … Continue reading No stone left unturned

Kade always had beautiful handwriting. Often commented on by teachers at primary school, more than one teacher acknowledged this and said it was so beautiful especially for a boy. Recently I came across some school work from August 2015, my heart sank it was a mess. Below are some examples: Kades handwriting (primary 4/5) Kades … Continue reading A recent discovery!

Kade playing his piano and a drawing he did of Hugh Laurie. It amazes me that his brain has been hammered by this disease but he has kept hold of some real gifts.

It has been two years and three months since every thing began to go wrong. That is a long time when you are a child. Remember how long the summer felt when you were small or the weeks until Christmas came? It is a very, very long time I am sure you will agree. After … Continue reading Before he falls

So far Kade has had 8 rounds of IVIG. The improvements are enormous. My mind is blown when I look back at videos of how much he suffered physically. He can walk short distances. I never thought I would be sitting here excited by the fact my son can walk from his own front door, … Continue reading Start by doing what’s necessary.