Kirsten’s story

It’s not just families with young children to benefit from The Sandcastle Trust’s accessible holiday breaks. Families with adult children with genetic conditions can also apply to our Sandcastle Memories programme, and benefit from a day out with their family, or a fully accessible UK holiday.

These respite breaks are invaluable for families such as the Hardmans – who are caring full time for their daughter Kirsten, 27, who has a genetic condition and lives with complex needs and mobility issues. Kirsten needs round the clock care as she can injure herself, she is a wheelchair user, has developmental delay, scoliosis, autism, is doubly incontinent and is non-verbal.

Kirsten was born in South Africa, and at birth had struggled to feed and ‘failed to thrive’. The family moved to Liverpool when Kirsten was 15 and she settled into a new school. Despite genetic testing in South Africa, the family did not have a diagnosis. Then in 2019, a breakthrough came from the Deciphering Developmental Disorders (DDD) project – a diagnosis of Shaaf-Yang Syndrome (SYS), a rare genetic condition which shares similarities with Prader Willi Syndrome. Children with SYS can have low muscle tone, feeding difficulties, developmental delay and autism. They can also have weight issues and feel hungry all the time.

Jane Hardman, 54, is a full-time carer for Kirsten. Jane’s husband Bruce, 53, is a logistics driver and their eldest daughter Caitlyn, 29, lives nearby.

“It is a rare condition and there are only about 3000 cases of SYS worldwide,” Jane explains. “When Kirsten was born, she had difficulty feeding and she was tube fed for the first six months of her life. She stopped breathing a lot. She couldn’t open her hands; she had club foot and a bad squint in her eye that was operated on. The doctors said she wouldn’t walk and gave her six months to live. She actually did walk, aged three-and-a-half.

“It was costing everything we had to stay in South Africa and pay for medical bills. One doctor said, ‘I’m wasting your money.’ There was nothing they could do and didn’t know what the cause was. We came back to the UK – we had family here – and joined the new DDD study. Kirsten, Bruce and I had swabs taken and they managed to find exactly what it was, which was amazing. It really helps with understanding her needs.”

Kirsten attends a day centre two days a week, but an assistant is only available to attend with Kirsten on one day, so Jane goes with her on the other day. Kirsten uses a wheelchair as she can’t walk for long distances due to low muscle tone and scoliosis. She needs incontinence pads and also has sleep apnoea and can stop breathing at night. She is non-verbal – communication is difficult as she won’t use online communication apps, but she understands everything. She likes Lego, she’s now working on 8+ years, jigsaws and computers, but her favourite thing to do is swim.

Jane says: “I look after Kirsten full-time and we haven’t had a holiday for a long while. During the pandemic, the day centres were closed, so Kirsten was at home full time. It was one of our social workers who asked if I need a break, so I applied to The Sandcastle Trust.

“Kirsten loves the pool, she’ll be in it for four hours and she’s happy as anything. She loves to go anywhere with a pool so we were thrilled to get the Skegness caravan break with a pool on site!”

The Hardmans stayed at The Sandcastle Trust’s fully adapted static caravan in Skegness this summer (2023) and were joined by Kirsten’s sister Caitlyn to help out.

Jane explains: “Kirsten loves caravans, she doesn’t want to go on any other holidays.  She loves the penny arcades, the parks and the swimming pool. She slept with me so I can watch her and the bed was so comfortable. We get nervous in the night as not only does she have sleep apnoea, but she has been known to get up to mischief, she flooded my bedroom at home once.

“Every day we went out and fed the ducks and Kirsten would go swimming in the afternoon and then go to the play area or the beach front. One day we went to the Seal sanctuary, which was great fun, she loved getting up close to the seals. They jumped up and she got nice and wet – she loved that!”

For the Hardman family, the Skegness holiday gave them precious family time together with memories to cherish.

Jane says: “It was just great to make memories with Kirsten. It makes your day to see the smile on her face. She was forgotten about in South Africa and now she lives a life and she’s happy. It’s all I wanted for her.”