Where do I start? Well, Chloe was a normal pregnancy and a normal birth, in fact she was overdue by two weeks when she arrived. It wasn’t until she was a few hours old that we noticed she was breathing oddly. We told a nurse and a doctor and were advised that it was normal, so we went home with Chloe.
Very poorly in hospital.
Midwife sent us back to hospital
Chloe cried all that night. The next day my midwife came to check us both and she noticed Chloe was very poorly and sent us straight back to hospital.
That’s when it all started. Chloe was transferred from one hospital to another, where she spent nine days in intensive care.
Finally a diagnosis after 12 months
We were told Chloe had a metabolic disease, but they weren’t sure what it was. They thought maybe it was a mitochondrial condition. Chloe was 6 months old when at last a doctor had an idea what it was. But it took another 6 months to diagnose GSD1a.
Chloe today, never gives in.
In that time Chloe had to be fed through a tube down her nose. When Chloe turned 3 she had to have a gastrostomy and has to be fed 24 hours a day still to this day.
She is just amazing
Chloe still gets very poorly now and then, due to having regular water infections. She has a large liver and her intestines are larger than people who don’t have a liver GSD.
But she is the most kind little girl you could wish to meet.
She never lets getting poorly stop her. She is just amazing, she makes us proud every single day.
Claire Donald, Chloe’s mother.
