My son Sebastian was 8 weeks old when the problems began. It was September 2014 and our poor little lad was sickly and dehydrated.
The GP referred us to Bolton Hospital, where Sebastian spent 12 days having tests.
After, my husband Stephen, 33, and I were summoned to the Genetics lab at Manchester Children’s Hospital.
There, doctors revealed shocking news...
‘Sebastian has Leigh syndrome,’ we were told.
They couldn’t be sure of the cause, but this rare, incurable genetic condition would lead to his nervous system gradually deteriorating.
He wouldn’t walk or talk. Worse, our boy might not even make it to 2 years old. ‘Why our son?’ I sobbed. But we had to be strong. He needed constant care. With chronic muscle weakness, Sebastian was drained of energy and…
