He added: “Laura and Michael’s participation, as well as the participation of hundreds of other families in Northern Ireland will undoubtedly help other people and already has.
“Laura gave me permission to speak about her daughters when teaching medical students about genetics, and that has also been extremely powerful.”
Michael said: “We might not get to spend our lives with them, but the fact that our girls might help other families is amazing to me.
“As a daddy, if I wanted our girls to go on and achieve something, you can’t ask for anything more than that, I’m so proud of them.”
A rare disorder is defined as a condition which affects less than five per 10,000 people in the population.
About 100,000 people in Northern Ireland – one in 17 – are affected by a rare disorder.
If you have been affected by any of the issues raised in this article, help and support is available at BBC Action Line.
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