Tag: rare disease

Parents of baby with ‘self-harm’ syndrome share first warning sign that started days after birth

Parents of a child diagnosed with rare Lesch-Nyhan Syndrome share their journey,…

Molly Pennington Molly Pennington

‘I’ve lost count of my girl’s broken bones – people ask why I kept her as a baby after rare diagnosis’

Mum Emma Honća shares her daughter Mya's journey with osteogenesis imperfecta to…

Molly Pennington Molly Pennington

‘I lost 40 pounds from a rare disease – my body was eating itself’

A 17-stone bodybuilder, rapidly lost his weight and ability to speak due…

Molly Pennington Molly Pennington