On the 18th June 2022, our amazing Teddy Aaron Ward was brought into the world. After a week spent in PICU, we got Teddy home and started lives as a new family, and had the most perfect little boy.

Along came March 2023... following a couple of unexplained UTI's, and a couple of chest infections, we also were noticing developmental delays, him not growing, and then losing his appetite completely, so we took Teddy to see his consultant. This was a day that we saw a different Teddy, a very lethargic, moany baby that we were not used to. It turns out Teddy was Hypoglycemic, and that's where his journey started. We spent 2 weeks at St Mary's before being transferred to Evelina Hospital London where we spent a further 5 weeks. Teddy was initially diagnosed with a Glycogen Stroage Disease (GSD), but the doctors still weren't convinced as he presented differently to a normal GSD patient. This prompted more tests, and a full DNA test of Jess and I, as well as Teddy, to see what it could be.

October arrives and we get some early results back, and it turns out that Teddy doesn't have GSD. Meaning we would have to wait for the full results to find out what was actually going on.

Fast forward to January 2024, we headed to Evelina for routine profiling. What we didn't expect was the news that would change everything! At 11am on 24th January 2024, we were told that Teddy has a life limiting mitochondrial disease, and an extremely rare defected gene (DNAJC19). This defected gene causes something called dilated cardiomyopathy, which is the degeneration of Teddy's heart.

To the doctors knowledge, Teddy is only 1 of 55 in the world to carry this, and the only known case in the UK, so we have limited research and unfortunately no cure.

Please help The Lily Foundation in any way you can to keep fighting the most cruel of diseases, and we will carry on making sure that our Mito-Bear continues to thrive, be the happiest little boy, and live the best of lives!