“Mitochondrial donation would allow my partner and I to start a family with the peace of mind that we will not pass this horrible genetic condition onto our children”.

Growing up, my sister displayed a number of symptoms of mitochondrial disease including ataxia (tremors) in her hands, balance issues, hearing loss, speech impairment and intellectual delay. We knew there was something wrong, however, doctors couldn’t determine what caused her symptoms or how we could help her.

Bethany Hodge

After a number of years of being put through various testing, my sister was diagnosed with a type of mitochondrial disease called MERRF syndrome (Myoclonic Epilepsy with Ragged Red Fibres). Once we received this diagnosis the rest of the family was tested. As a result of this testing, we discovered that mum, my brother and I were carriers of mitochondrial disease. 

 

On a daily basis, my sister struggles with tasks such as eating, doing up buttons and shoelaces, writing and reading. In order to feed herself she uses one hand to steady the other. She has difficulty with her limbs which can impact her balance, thereby making her clumsy. Given these issues made my sister “different” she is often quite isolated and struggles to make friends. As a family, this has caused a lot of stress as she requires support with essential basic day to day tasks. 

Mitochondrial donation would allow my partner and I to start a family with the peace of mind that we will not pass this horrible genetic condition onto our children. It will stop this vicious cycle of it being passed on from generation to generation. Mitochondrial donation will also provide us with the ability to have a child that has my DNA rather than the DNA of a donor egg. After seeing how mitochondrial disease has affected my sister on a day to day basis, we want to do everything in our power to prevent it from happening to our children. 

 

Bethany Hodge

2021