Thanks for visiting our page 🙂 We'll be walking a Coventry Way (40 miles) in under 24 hours on the 10th of September. Please donate if you can and if you'd like to join for some or all of the walk, please let Rhiannon or Claire know. 

Read Carys and Nick's story below to understand why we're supporting Leeds Children's Hospital and the amazing work they do:

"Have you ever heard of Tuberous Sclerosis? Didn’t think so, and neither had we until recently. But we remember the day vividly. After a routine growth scan 3 days before our due date in our local hospital we were rushed up to Leeds Children's Hospital as the sonographer found anomalies in Tommy's heart. After some investigations, they found he had heart rhabdomyomas (tumours) - too many to count, and this was likely caused by a rare genetic disorder ‘Tuberous Sclerosis Complex’ (TS).

TS is a rare genetic condition that causes mainly non-cancerous (benign) tumours to develop in different parts of the body. The tumours most often affect the brain, skin, kidneys, heart, eyes and lungs. It causes seizures, intellectual disability, developmental delays and behavioural problems. For Tommy this has been a random occurrence and along with the heart tumours, they also found he has 2 brain tumours, which cause him to have seizures without medication.

It was decided that Carys was to stay and be induced in Leeds and on the 24th October 2021 we welcomed Tommy into the world, who then went straight to NICU and the Childrens Cardiac Ward after that.

It became obvious to the consultants at Leeds that the tumours in his heart were too many, and in too awkward places to operate, so we were left with no choice but to wait and see.

Thankfully the doctors at Leeds heard about the use of an immunosuppressant used for kidney transplants in adults being trialled in the US on cases such as Tommy's, so they set to work licensing the drug for Tommy and what can we say - the rest is history! This drug has worked far better than anyone ever thought it would and has cleared his heart tumours in 8 months.

To say that Leeds Children's Hospital saved Tommys life is an understatement and for that we are eternally grateful. Throughout this time, Leeds have supported us with dedicated specialist nurses, fortnightly blood tests to check his drug levels, EEGS and cardiology clinics.They have also organised genetic testing to confirm the TS diagnosis and support for further care that Tommy will need growing up.

Tommy will be supported by Leeds Children's Hospital for the rest of his life. The staff have been nothing short of amazing and have treated Tommy like their own throughout. We are eternally grateful ♥️."