I believe in fate but....

When you lose a baby, a lot of people are quick to tell you that everything happens for a reason and I appreciate the sentiment that we learn from things that are sent to try us, and that we should see the good rather than the bad in painful situations. But as I’ve said before, when a baby dies no one wins. Yes we can learn from it. Yes we are stronger as a result. Yes we’re channeling our grief to do good, to raise awareness and to make the most of life.

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Genetics - a whole new world

1 in 4. Those are our chances of having a baby with NKH.

Nonketotic hyperglycinemia, or NKH, is a very rare genetic disorder, caused by a defect in a child’s genetic coding which means that they can’t break down Glycine. Glycine is an amino acid that is found naturally in our bodies and we need it to grow and develop properly, but when it’s not broken down and accumulates, it effectively becomes poisonous. The result is severe disruption to movement and development, brain damage, seizures and muscle weakness. Children with NKH tend not reach milestones past those reached by a regular 6-week-old infant. It’s not pretty. It’s terminal and currently there’s no cure.

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