Episode 6
Rare Disease Awareness Month - Leo's Story
Published on:
5th February, 2025
In 2021, Kim and Keith Firmin’s world was turned upside down after they were told during pregnancy that their unborn son had a complex heart - double inlet left ventricle (only 3 out of 4 heart chambers work) and pulmonary stenosis (heart valve disease). At just 9 days old, medical professionals noticed that Leo also had a type 3 laryngeal (Airway) cleft – which had to be surgically repaired 3 times. At 3 weeks old he had tracheostomy surgery. Today, his mother Kim, shares her story with Tahnee.
List of Charities
REACT: for children under palliative care and very high needs. They give large amounts
-Family Fund (large amounts every 2 years)
-Maia Mouse (£250 minimum given)
-Little Teds - Free caravan in Wales: Not wheelchair friendly
-Make a wish foundation (3+).
-Rainbow trust: Provides a family support worker
-Newlife the Charity - Changing the lives of disabled children (newlifecharity.co.uk)- Big grants for large items
-Home | JUMP Children's Charity (jumpchildrenscharity.co.uk) - Free photoshoots for families.
