The most famous and bravest maneen

We’ve been up in Temple Street hospital now for a couple of weeks minding Theo as he had an incident at home. Suffice to say any SMA1s newly diagnosed make sure you have bibap, cough assist and suction machine at home. I know it is a lot to take in at first but we always wanted these devices since his diagnosis and luckily once we get home this time we will have everything we need to take good care of the little man.

The bravest and most famous man

Theo is such a strong man and pulled through this amazingly. He is now in Temple street hosptial in Dublin and we staying with him. He is doing really well and we are battling hard to get him Zolgensma as his once off treatment soon and we are hopeful for this to get him the state of the art gene therapy. The petition for Kate and Theo who would be the two children I believe right now would get the therapy in Ireland. It’s hard to imagine it has taking them this long over pricing negotiations, but I’m confident we will know more this month about it.

Thanks to Stephanie for setting up such an amazing Instagram page. It is doing absolutely super and it is so helpful to reach out to the amazing SMA community we now find ourselves in.

Theo and Kate were also featured in the Irish Examiner newspaper and all our family and friends are being an amazing support during this time.

Here is Theo doing his new favourite trick with his cow in the ICU only a few days he was being so brave getting back to his best form.

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