Our brave boy passed away at home. Such grief... Cuddling my newborn Anthony, he flashed a gorgeous, gummy grin. ‘He has your eyes,’ my partner, Tony Rushe,
29, smiled.
We were smitten.
Anthony had been born weighing 7lb 8oz, all pink and perfect.
Being a mum was a dream, even though Anthony cried a lot.
But by 5 months, he couldn’t lift his head, was floppy, and still cried constantly.
‘Something’s wrong,’ I told our GP.
And after a week of tests at the
Royal Preston Hospital, the paediatric neurologist had bad news.
Anthony, then 6 months, had
Krabbe disease. A rare, fatal, degenerative disorder affecting the nervous system.
‘Life expectancy is 13 months,’ she said.
We broke down, distraught.
All we could do was fill the little time Anthony…
