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.Read More
If I had a dollar for every time told me a story and prefaced it with “ of course it’s nothing compared to what you’ve been through but…” I’d probably have enough to fill a piggy bank by now.Read More
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.Read More
Most places I looked when I first lost Leo wanted me to drown in misery. They told me it was ok to stay in bed for a week and cry. But I didn’t want to do that. That’s just not me. Of course I cried and I still cry….but I also wanted to live my life and do Leo proud by being happy. I told him in the hospital that I promised not to drown in self-pity and that I would get dressed and look presentable every day - I would be the young, fun Mum I’d dreamt of being.Read More