Harry was born in November 2017, along with his twin sister Isabelle, having been born 9 weeks early. After spending over 5 weeks in the special care baby unit at Lister Hospital, Harry and Isabelle’s parents were delighted to take their babies home.

However, during their first year Harry didn’t develop as well as Isabelle. “We were only getting 3-4 hours of broken sleep a night as Harry wasn’t sleeping properly, he wasn’t reaching milestones that other children of a similar age were such as crawling, and his muscles were still weaker than they should have been” explained Harry’s mother Emma.

After seeing a consultant and having numerous scans, Harry was diagnosed with Craniosynostosis, and was referred to Great Ormond Street. However, upon further genetic testing, it was discovered that Harry actually had Williams Syndrome, a very rare disorder that occurs randomly and affects only one in 18,000 people in the UK

Due to his diagnosis, Harry spends a lot of time at the Lister in the children’s unit, where the Hospitals’ Charity previously funded a brand new £250,000 playroom. The purpose built building, which meets the complex needs of children, is wheelchair-friendly, with specific facilities for children with cancer and those with sensory impairments.

Harry currently has 11 different specialists dealing with his medical care and is regularly at the Lister; however Harry hasn’t been admitted to hospital since December, and the doctors, nurses and play specialists have struck up a special relationship with Harry and his family.

May is Williams Syndrome awareness month. In order to find out more about Williams Syndrome click here.

To find out how you can support our children’s unit, visit the East and North Hertfordshire Hospital’s Charity website here.