Thanks for taking the time to visit my JustGiving page.

Our beautiful daughter Sophia was born in September in London (arriving early before our move back to Newcastle!) Sophia was very floppy and needed oxygen but nobody was sure why. After 3 weeks and lots of tests, she was flown up to Durham and we took her home on a trickle of oxygen as doctors believed it was due to her being born a few weeks early.

After 10 weeks Sophia went blue suddenly and her eyes were moving erratically. She was taken to hospital in Newcastle and saw the mitochondrial team after an MRI suggested she may have mitochondrial disease. This was a devastating diagnosis as we learnt that mito is incurable and for those who present symptoms as babies, it is very rare to survive beyond the age of 2. 

Life continued and in April we decided to take Sophia on holiday. On the 2nd day she  was put onto life support in Spain due to a collapsed lung. She was flown back to the UK and recovered from pneumonia. Sadly a few days after coming home her seizures became uncontrollable. After a few weeks back in hospital and with scans revealing more damage to her brain, we made the painful decision to remove her life support. 

We desperately wanted to donate Sophia's organs and a match was found for her kidneys. We all said her goodbye. Unbelievably, Sophia decided to stay with us for 4 more days and we moved into St Oswald's hospice where we shared some amazing family time and made some lovely memories.

We are fortunate that this excellent charity have helped not only us but our wider family with support in dealing with the diagnosis and our loss. Lily are working extremely hard to find treatments and a cure and are making massive progress in giving families a genetic diagnosis, enabling them to have future healthy children. We are passionate about raising money to raise awareness and to work towards a cure for this truly awful disease. 

Thank you

Michelle & Anthony