Livvy

Meet Livvy, a 22 year old who loves fashion and going out for day trips with her family. When you meet Livvy, you can’t help but notice her brightly coloured nails, beautiful plaited hair and bright, trendy clothes.  Her younger sisters, Daisy and Grace, help her keep on top of the latest trends and decorate Livvy’s bedroom in Orchard Bungalow, (the on-site residential accommodation at Chailey Heritage Foundation). Livvy is also very close to her younger brother, Harry. 

Livvy has Phelan McDermid Syndrome (a progressive genetic condition), epilepsy (Lennox-Gastaut Syndrome) and profound autism. She also has frequent seizures, and severe scoliosis of the spine. Her complex needs means that she needs full time care.   

Transitioning here from Downs View School and Link College in Brighton was a big change for Livvy, as having autism means that she likes structure and routine. Her transition was made as smooth as possible by the team at Chailey Heritage Foundation, introducing her slowly to the Leisure and Skills Centre, Hub sessions and on-site accommodation. Then Covid-19 and lockdown hit, and like many other young people at Chailey Heritage Foundation, Livvy was unable to attend due to her high health needs and vulnerability.  

Livvy’s Mum, Amanda, who is a Futures’ Parent Governer at Chailey Heritage, explains how difficult that time was for the family. “Trying to work full time from home with three other children and giving Livvy everything she needed was so challenging, particularly as she has regular seizures which can be upsetting and stressful for the other children to see. I just felt that Livvy deserved so much more.” On top of all of this, the family were under additional pressure when Livvy’s Dad, Neil, was diagnosed with cancer in December 2021. Neil had to undergo chemotherapy, radiotherapy and surgery, so looking after Livvy was particularly difficult during this time.”

Livvy became a full time resident in Orchard Bungalow in June 2022. Amanda explains, “For us, it was about realising that it was in Livvy’s best interests because at Chailey Heritage Foundation she has such a full timetable of activities. She’s engaged, stimulated and leading such a rich quality of life - Chailey Heritage Foundation has been an absolute lifeline and gone beyond our expectations.” 

It has shifted the focus for the family too, allowing them to enjoy family time with Livvy without all the challenges of her full-time care routine. “It allows me to be her Mum instead of her full-time carer, enjoying quality time with her and it’s the same for her Dad and siblings too.”

Kelly, who has worked with Livvy since she started at Chailey Heritage Foundation says, “Livvy has transitioned so well and absolutely loves all the activities the Hub and LSC have to offer, especially cooking, art, drama and swimming, but her favourite is definitely music!”

Livvy also enjoys going out for day trips and loves people watching. Kelly says, “Livvy is adventurous and happy to try anything - she loves going to Glow Wild, Kew Gardens and for her birthday this year, her family are taking her to Harry Potter World!” Her family visit her regularly and Livvy has her own mobile phone so they can text her so that her team can read out their messages. She also sends them pictures and films to share what she’s up to, which they love to see.

Kelly explains that although Livvy has no conventional ‘yes’ or ‘no’ response, her team can understand what she needs by carefully observing her body language. Livvy’s Mum says that Livvy’s walking has been an incredible achievement which is a direct result of being at Chailey Heritage.

The family have been “blown away” by the care Livvy receives at Chailey Heritage Foundation and the progress she is making. “Many people just see a profoundly disabled young person who has no language, can’t walk and is fed through a gastrostomy tube. But Livvy is completely defying expectations and making such astonishing progress! Amanda says the fact that Chailey Heritage never gives up on young people, supplying specialist input at every stage which is bespoke to Livvy’s needs, means that she is thriving. “She just looks so well; it is truly wonderful to see.”