This is an image taken at The Senedd of a Rare Project exhibition.
Jake is a happy, sociable boy who loves meeting people. He loves his family and friends and thinks nothing of going up to strangers and hugging them. He loves music and his karaoke machine. Jake also has a fascination with water so swimming is a favourite activity. He dislikes face painting, masks, fancy dress and animated characters.
Jake also has Angelman Syndrome.
When Grace came into the studio to take part in the Rare Project she was an absolute delight and loved showing me her dolls and toys. Her smile and bubbly personality hides the fact that at such a young age she has already been through so many challenges.
Grace has multiple issues, starting at her head, she has a brain injury called PVL, Periventricular leukomalacia, her spine finishes above her sacrum, Sacral Agenesis (SA), around T12, her spleen is on the wrong side, she has a heart murmur and she had a cyst on her lung which was removed, her intestines were rotated but that was also fixed (at 7 days old)! As a result of her SA the nerves which control her bowels and bladder didn't ever develop and so she is incontinent. She currently in pull ups. She has low muscle tone in her legs and talipes - poss due to the SA or the PVL no one knows.