What is Mitochondrial Disease?
Mitochondrial disease, or 'mito', is the term given to a group of medical disorders caused by mutations in mitochondria, the tiny organelles that are present in every cell in our bodies and which generate about 90% of the energy we need to live. Cells cannot function properly without healthy mitochondria, so when they fail the consequences can be serious and wide-ranging. Mitochondrial diseases affect people in multiple ways, depending on which cells are affected. This can make the condition hard to diagnose, as symptoms often resemble those of other serious illnesses. For example, a person with mitochondrial disease may suffer from seizures, fatigue, vision and hearing loss, cognitive disabilities, respiratory problems or poor growth. Any of the body's organs and systems can be affected including the brain, heart, lungs, gut, liver and skin.
Why are we sharing Grace's Story?
We had only heard on Mitochondrial Disease once... the sad story of Charlie Guard. For us this we a huge shock we had a perfectly healthy 3 year old daughter and the only warning sign we had before it was too late that this disease was waiting to strike was her delayed walking. Upon speaking to professionals this symptom alone was incredibly unlikely to lead them to the diagnosis of Mito, why would it? She was a bit unsteady in her feet, she could still run, jump and play she just wasn’t as advanced as those who own age! We want everyone to know this awful disease exists and just how cruel it is to families... there is no sugar coating it those who have mito are life limited!
Mitochondrial Disease research is under funded and without the amazing work of The Lily Foundation it would be even less funded here in the UK.
We need to find a cure to stop future families suffering like we have an so many others.