12th April update

Dear friends,

Another week has passed. Bram is still on the intensive care unit. This morning he had another round of surgery (his 4th).His external drain was replaced by an internal shunt which reroutes excess brain fluids into his abdomen where the body will get rid of it. So far it looks like this procedure has been successful. Bram is awake again and moving arms and legs and looking around. We had hoped this surgery would not be necessary but hopefully this sorts this once and for all. Bram is still experiencing breathing difficulties. Therefore he is still connected to a ventilator. When he recovers from his latest surgery the medical team will focus their attention on his breathing. We expect that Bram will end up with a temporary tracheostomy, and have surgery soon to do so.

Progress is slow but we can still see Bram improve every day and are hopeful that Bram can make some big steps in the coming week.

We are still waiting for a decision from the NHS medical board regarding Proton Beam Therapy in the United States. We are not expecting a decision before Bram has recovered from his current surgery and his breathing difficulties have been sorted.

Bram continues his fight and we will be there to support him and make sure he comes out as a winner!

Thank you all for your support over the last month. Our lives have been turned upside down. We are upset, emotional and afraid. But we are also positive and upbeat. We see that Bram fights every day and your kind messages do mean a lot to us. We feel we are not alone in this fight!

Love,
Jeroen, Laura, Max and our wee fighter Bram.

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