A 42-year-old Londoner is launching her own cerebral palsy (CP) charity for adults who she feels have been abandoned by the authorities as soon as they hit 18 years of age.
Emma Livingstone was diagnosed with CP when she was two-years-old after her parents became concerned that there was a delay in her learning to walk. She underwent intensive physiotherapy up until adulthood, learned to walk and talk like other children and has, to all intents and purposes, led a normal life other than having to install a Stiltz homelift to help her move between floors.
Emma trained to become a speech and language therapist and has been married to husband Derek for 11 years. They live in Barnet and have three children, Natan, 10, Libby, 8 and Callum, 4.
But Emma is concerned there is no support network nor is there access to medical services for adults with cerebral palsy.
This concern has led her to setting up the Adult Cerebral Palsy Hub as a registered charity alongside her physiotherapist Miriam Creeger, in order to raise awareness of adults that have the condition. A further aim of the charity is to support research and lobby for much-needed services.
Emma said: “Around 110,000 people are born with cerebral palsy in this country and it is one of the largest disability groups in the UK but there is no service provision for sufferers once they become adults.
“After my experiences of the last few years with my hip operations, it became very clear to me that there are no bespoke services for adults with CP and this needs to change. For example, at one stage I was visiting a polio consultant because that was nearest thing to cerebral palsy!
“Most CP charities out there are for children but my concern is about when that person reaches 18 years of age – I think it is fair to say that they are effectively abandoned by the authorities.
“This has led Miriam and I to found Adult Cerebral Palsy Hub which we hope, initially, will act as a community for adults with CP and give them a voice. Our mission is to educate, campaign for change, support research and lobby for medical services.”
Emma learned to live with CP from a young age and, although it is not considered a degenerative condition by doctors, three years ago her ability to walk became extremely difficult. The stairs became a huge challenge for her and she found it difficult to even lift her leg up and over a pavement curb. She was eventually diagnosed with hip dysplasia.
After undergoing hip reconstruction on her right hip, she returned home and spent the majority of 2016 recovering in a makeshift bedroom in the kitchen. Then unfortunately, her left hip started to suffer from a similar problem, resulting in her having a hip replacement in April of this year.
Before the operation, Emma and her husband considered downsizing to a bungalow but with three children this proved hard. In the end, the couple decided to extend their property and ‘transform’ Emma’s life by buying a Stiltz Homelift, which enables her to move from floor to floor simply and easily at the touch of a button. The Stiltz Homelift is the only freestanding domestic lift on the market and Emma’s wheelchair-accessible Trio model is installed in a space off the kitchen where it plugs staright into a domestic power socket with it travelling up ‘through the floor’ on discreet self-supporting rails to a first-floor landing area. The lift is powered by a quiet self-contained motor with no noise vibration, unlike other lifts which need to be bolted into a supporting wall.
Emma, who is still on crutches, said: “We decided to extend the house for more space and install the Stiltz which has transformed my life. It is not invasive, it looks modern and provides me with easy access to the whole house. It is also great for transporting the washing and kids’ toys!”