A couple whose son has a rare chromosomal disorder and requires round-the-clock care have spoken of the life-changing position they found themselves in. 

Six-year-old Stanley Harrold was born with Pallister-Killian syndrome. 

As a result, he has severe hearing and sight impairments, respiratory issues, and drug-resistant epilepsy. 

Since his diagnosis he has been supported by the charity East Anglia’s Children’s Hospices (Each) and is a regular visitor to its base at The Nook in Framingham Earl, near Norwich. 

Now, his dad Joe and wife Stef Partington have spoken out about their gratitude to the charity that continues to support with its Help at Home service. 

Mr Harrold said: “Stanley is our number one priority and all our time is dedicated to him. 

“We both juggle our work commitments with caring for him but it means other things get forgotten about. 

“We simply don’t have time.” 

Eastern Daily Press: Joe, Stef and Stanley meeting The Princess of WalesJoe, Stef and Stanley meeting The Princess of Wales (Image: Each)

Stanley, who will celebrate his seventh birthday in June, was also able to enjoy a very proud moment. 

In 2019, he was chosen to hand a bouquet of flowers to Each Royal Patron the Princess of Wales when she officially opened The Nook in November 2019. 

He and his family have received regular care and support at the hospice since 2016, including music therapy and hydrotherapy sessions. 

“Life can be very difficult but Each has been a great support to us,” Mr Harrold added. 

“Stef and I are a team and, although things can be tough and the future uncertain, we deal with everything together. 

“Stanley’s a lovely boy. He’s so resilient, considering how much he’s had to go through in his short life, and an absolute inspiration to us both.”  

The couple get regular help tending to their garden at their Norwich home, with volunteer, Julia, visiting regularly. 

Volunteers are matched with a family so they can provide vital practical support with chores like cooking, cleaning, shopping, decorating, dog-walking, and home improvements.