Team Teddy
On 18th June 2022, our amazing Teddy came into the world. After a week spent in PICU, we got our perfect little boy home and started lives as a new family.
In March 2023, following a couple of unexplained UTIs and chest infections, we were also noticing developmental delays and Teddy losing his appetite completely, so we took him to see his consultant. That day we saw a different Teddy – a very lethargic, moany baby that we weren’t used to.
It turned out Teddy was hypoglycaemic, and that’s where his journey started. We spent two weeks at St Mary’s before being transferred to Evelina Hospital London for a further five weeks. Teddy was initially diagnosed with a Glycogen Storage Disease (GSD), but the doctors weren’t convinced as he presented differently to a normal GSD patient. This prompted more tests, and a full DNA test of myself, Jess and Teddy, to see what it could be.
October arrived, as did some early results back, and it turned out Teddy didn’t have GSD, meaning we’d have to wait for the full results. Fast forward to 2024, and we headed to Evelina for routine profiling. What we didn’t expect was the news that would change everything. At 11am on 24th January, we were told that Teddy has a life-limiting mitochondrial disease, and an extremely rare, defected gene (DNAJC19). This causes something called dilated cardiomyopathy, which is the degeneration of Teddy’s heart.
To the doctors’ knowledge, Teddy is 1 of only 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 cruellest of diseases, and we’ll carry on making sure that our Mito-Bear continues to thrive, be the happiest little boy, and live the best of lives!
Teddy’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
