Lucy's story

Sam and Craig, who live with daughter Lucy in Kent, met on an MA course 20 years ago and are both currently working in the museum sector, Sam as a Museum Development Officer for Kent and Medway and Craig as Collections Manager at the Canterbury Museums and Galleries. 

Following IVF, which Sam describes as “hard going”, and a difficult pregnancy, Lucy was delivered by an emergency C-section as it was discovered she was in an extended breech position. Within an hour of birth, Lucy was misdiagnosed as having Down’s Syndrome, her unique genetic condition not being picked up until later. With no immediate family nearby, and with a daughter with a misunderstood genetic condition and multiple medical issues, Sam took the difficult decision not to return to work.   

Sam said “The first few months were incredibly hard and when Lucy was four months, I had a breakdown. Because Lucy’s condition is unique, it was difficult for anyone to really know what we were going through – there weren’t any support groups and I hated not fitting in at in the ‘normal’ mother and baby groups.”   

At six weeks, Lucy was diagnosed with hip dysplasia which turned out to be a soft marker for her condition and resulted in complex surgery at a year old. Her left leg was broken, reset and pinned in place, while she was encased in a plaster cast from chest to ankle for three months. Sick of being stared at, Sam started to design clothing to fit Lucy while her hips and legs took time to heal.   

Sam said “Following Lucy’s operation, there was no way she could wear shop bought clothes – everything new had to be cut up and redesigned to fit”. Recovery from this type of surgery is long and Sam, feeling a little better, dug deep and called on her old sewing skills. “I designed and made a pair of waterproof trousers that Lucy could wear in her pushchair if the weather was bad.”   

Over the next six months and with the help of a business grant, Sam developed a successful online business, designing clothes for children diagnosed with hip dysplasia, winning several awards, including the gold award at the Prima Baby magazine awards in 2015 for her sleep suit. “It was tough” says Sam. “I remember Lucy having surgery for a hole in her heart when she was two and a half and sat next to her hospital bed at two in the morning replying to customer emails.”   

Despite her huge success, Sam missed her old job and, when Lucy was eight, Sam sold the business and made the decision to go back to her original career in the museum sector. Passionate about accessibility, Sam works part time and has developed a toolkit to help children with SEND to access museum resources, works with schools across the area on accessible content and regularly presents at conferences on the subject – “I feel like an accidental activist” she says. 

How we have supported Lucy and her family

The family have been accessing services at Demelza Hospice Care for Children in Sittingbourne for six years. With no family locally and Lucy’s grandma suffering from arthritis, the support from Demelza has been invaluable but the initial visit was very emotional.   

Sam explains “The connotation of the word ‘hospice’ was frightening, I was angry, couldn’t acknowledge the situation we were in as a family and didn’t want to be there, yet I needed the respite. My mum came along with me and as we reached the end of the care corridor, we looked back to see a little girl in a white shift dress standing at the opposite end. She looked like a ghost and as we stared, she laughed and ran off, at which point my mum burst in to tears”.   

The family have since come to rely on the services they access at Demelza.  “I’m not sure where we’d be without Demelza’s respite services” says Sam.  “We can enjoy family activities and meet up with friends at the hospice with access to all the facilities we need. Lucy loves having a family swim in the hydro pool and enjoys art therapy and music sessions.”  Sam and Craig also use the respite service for Lucy when they need visit Craig’s father who has dementia.  “Demelza saved our family’s sanity, we are so grateful for the help”. 

The family are shielding as a result of the Coronavirus pandemic and Lucy’s condition. The slower pace of life has seen some surprising and very welcome changes in the Bowen family household. Sam says “As Craig and I have been working from home, we’ve been able to eat together as a family at lunchtime as well as in the evenings. Lucy has dysphasia so her food is blended and we feed her. But in the second week of lockdown, one lunchtime Lucy grabbed the spoon and started feeding herself! I was blown away, she is so amazing! Taking advantage of the good weather, we had our first alfresco dinner together outside too!” 

Sam says “Lucy is hilarious! She has a big personality – very sociable, happy and determined. She may be non-verbal but is a master of reading situations. We communicate using PECS, a picture card system. She makes very clear choices in what activities she wants to do. Sam continues “I’m so proud of Lucy and all she is. It has made me determined that when this is all over me, Craig and Lucy will take my mum for a slap-up meal in one of the expensive restaurants nearby. I want to celebrate who we are as a family, how Lucy has grown and blossomed through this and how empowered I feel as Lucy’s mum.”