Our little girl Molly Elizabeth was born on 20th May 2020. A week later Molly was rushed into hospital following multiple seizures and was placed in an induced coma. Molly stayed in NICU for three weeks whilst undergoing many tests and scans to determine the cause. Once Molly was stabilised we were discharged from hospital and had a few agonising weeks to wait for genetic test results to come back. We remained positive and hopeful that we would receive good news for our little Molly.

On 3rd July 2020, our worst fears were confirmed when Molly was diagnosed with a rare, life limiting condition called PDH deficiency, of which there is no cure or treatment. At this point our entire world fell apart, we went home from hospital not knowing what the future would hold for our beautiful baby girl.

The Freya Foundation charity have supported our family since we received Molly’s diagnosis, providing us with much needed hope and advice, the opportunity to connect with other families going through this difficult journey, making us feel less alone.

As well as being on hand to support families they also provide counselling, arrange family meet ups, campaign tirelessly to raise awareness of this condition and are funding groundbreaking research projects to understand more about the condition, enabling better outcomes for children. Their latest research project will focus on developing gene therapy for PDH, this is hugely exciting and will be the first of its kind in Europe.

For such a small charity, they truly are AMAZING and deserve to be recognised.

Any donation you can give no matter how big or small will contribute towards raising awareness of this cruel disease, support more families affected by this condition, and fund vital research projects to find a cure.

Thank you for taking time to read my story.

Hannah x