As far as we were aware Freddie was born a healthy baby. He fed well and hit milestones when he was supposed to. It wasnt until 6 (ish) months we started having a few concerns about his development slowing. Then, at 8 months old, Freddie was rushed into hospital following a suspected seizure which was confirmed and diagnosed as Infantile Spasms. That night was the first opportunity we had to discuss his development with doctors and it quickly became apparent that there was something far more seriously wrong. Within a few days we received the devastating diagnosis of Mitochondrial Disease. A few months later it was confirmed Freddie has a form of Leigh Syndrome.

For those unfamiliar with these diseases, your mitochondria are, essentially, the powerhouse to your body. They give you energy to do anything and everything; from keeping your organs working and fighting infection to operating your senses and physical skills such as walking. When these dont exist or function as they should life becomes difficult and, depending on the extent of the fault, significantly shorter. In short Mitochondrial Diseases are life limiting and degenerative. There is no cure.

Freddie has epilepsy, dystonia, weak muscle tone, which causes him to be incredibly behind in terms of physical development, but has also contributed to; gastro reflux disease, an unsafe swallow leaving him reliant on a gastrostomy for hydration and nutrition, and extremely limited in terms of vocal sounds and words. He has global development delay and a weak respiratory system. On top of all that he is more vulnerable to fighting infection if he catches something.

Thankfully Freddie doesnt let any of his symptoms hold him back. He is extremely determined and has always found his own way to do things and navigate his world. Hence why he is our Super Fred! He is a very happy little boy and has a cheeky sense of humour which is contagious. He loves books, trains and anything Julia Donaldson. He has taught us to make the most of the small things and enjoy life to the fullest.

Super Freds story has inspired various people to take on challenges and push themselves to raise money for The Lily Foundation. This page is where all that support can come together. The Lily Foundation are very important, not only to our family, but to hundreds of families who find themselves in our situation. One day we hope to find a cure for these diseases.