But just 2 weeks after Freddie was born, he started losing weight and nobody knew why. The doctors were not particularly concerned but Freddie’s mum was not convinced.
‘I remember one day hearing my mum say on the phone, ‘we need to take him to hospital; I can feel him shutting down’ because he wasn’t responding to her’, says Sophie.
So, Freddie was airlifted to hospital in Brisbane and put in intensive care.
But it took several days to diagnose Freddie because his condition was so rare.
Freddie had Congenital Adrenal hyperplasia, a hormonal condition that means Freddie’s adrenal glands don’t produce cortisol.
For Freddie, a virus or broken bone could be deadly if he doesn’t get an extra dose of his medication in time.
Freddie is a very happy 4 year old boy. He knows that he is sick but he is cheerful and in many ways spends his days like any other child.
But Freddie will never play contact sports and will always need to be more careful than other kids because of his condition. He always needs to be within close proximity to his doctors in case of an emergency which means travel is very limited. There are lots of things that Freddie will miss out on because of this genetic disease.
So, Sophie is raising money this Jeans for Genes Day to support her brother and to fund research that might find a cure or treatment for his condition.
This August, Sophie will be asking her friends to donate to her online fundraising page and will go door-knocking to collect donations.