“He thought no one cared, he thought he was on his own”

Jamie, Amanda, and Luna aged 2, an adorable family of three.

Luna won’t remember her Dad when she’s older, but Jamie and Amanda are determined not to let that happen. Ever since Jamie received his Diagnosis, they’ve been spending every moment making memories together, ones that will last Luna her whole life.

There is no known cure for it. There is no research for it. There’s just hardly anything about it because it is so rare.

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Five years ago… Martinus had a stroke

We have faced the challenges of life together, always knowing that we could count on each other. Five years ago, while we were travelling to visit my then seriously ill mother, Martinus had a stroke. One cannot understand how drastically life can change in the course of a few seconds until one has experienced it. From the second I looked at his face, which was drooping on one side, and realised what had happened, almost everything we had taken for granted was turned upside down and inside out.

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