A couple whose son has a rare chromosomal disorder and requires round-the-clock care have spoken of the life-changing support they receive from a children’s charity. Six-year-old Stanley Harrold was born with Pallister-Killian syndrome and is a regular visitor to the East Anglia’s Children’s Hospices (EACH) base at The Nook.
He has severe hearing and sight impairments, respiratory issues and drug resistant epilepsy. Dad Joe and wife Stef Partington are supported by EACH and especially grateful for the charity’s Help at Home service.
Volunteers are matched with a family so they can provide vital practical support with chores like cooking, cleaning, shopping, decorating, dog-walking and DIY. In Joe and Stef’s case, they get regular help tending to the garden at their Norwich home.
“Stanley is our number one priority and all our time is dedicated to him,” said Joe.
“We both juggle our work commitments with caring for him but it means other things, like gardening, get forgotten about. We simply don’t have time and it would look like a jungle out there, were it not for our volunteer, Julia.
“Something like weeding and pruning, for instance, is the last thing on our minds but, thanks to her, our garden looks brilliant. She helps so much and is a brilliant, lovely, compassionate and empathetic lady. I don’t think there are many people like her in life.
“Julia’s a great listener. She’s never intrusive and we’ve got a lot of shared interests. She’s full of ideas for our garden and makes such a massive difference.
“She’s a lovely person to have in our lives and we both feel strongly about her and what she brings to our family. I can’t stress enough how thankful we are.”
Stanley, who will be seven in June, enjoyed a very proud moment when being 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,” said Joe.
“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.”
EACH supports families and cares for children and young people with life-threatening conditions. In addition to The Nook, it has two other hospices – The Treehouse, in Ipswich, and at Milton, near Cambridge.