I’ve said before that in the days and weeks immediately after we lost Leo, I didn’t want to drown myself in tears. I HAD to transform the pain into something useful, something that would make Leo proud. Something that would keep his memory alive.Read More
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
You are the strongest person I know.
So many people have said that to me over the last 3 months and my initial response was “well, I’m not sure about that, but if I’m strong it’s becauseI have to be.” But I’ve since realised that I am strong and I am courageous.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
I can’t tell anyone how to cope with baby loss - everyone’s different and there’s no right or wrong way - and there’s also no right or wrong way to help someone through baby loss. You just have to be there. Even in silence, just being there is helping.Read More