Our beautiful first born daughter Hattie was born on 21st June 2023, we were besotted with her and obsessed by her every move.

We spent the first two weeks in NICU as she had a high Lactate level, our local hospital were in contact daily with GOSH about how to treat her. Although worried we thought all would be fine.

We finally got to take her home and spent 5 weeks blissfully unaware of any issues.

We settled into our new life together. It was at 7 weeks old, that Hattie started to have apnoeas, we called 999. From here on it seems like a blur, there were many hospital trips, ambulance rides and stays at GOSH. Mito was mentioned but wasn’t confirmed, so to protect ourselves we didn’t look into it, in the hope that it wouldn’t be that.

We finally got confirmation that Hattie had an abnormality in a gene called MT-ND1 and it was present in 93% of the mitochondrial chromosomes present in Hattie’s blood. She passed away in our arms in the September 2023.

Please help us ensure that one day in Hattie's memory a cure is found so no other family had to experience what we have.

Through The Lily Foundation we can give hope.