Luca’s story
Luca was the second child of Sarah and Pete who had been an IVF, embryo transfer. Luca was an emergency caesarean section after placental bleed and Luca suffered from delayed oxygen intake and loss of heartbeat. In NICU for 3 days then discharged as Luca could suckle and swallow bottle milk and was medicated for reflux.
Sarah and Pete were trained in CPR at the hospital and visited at home by a Health Visitor the following week to discuss a team required for cerebral palsy, including an Occupational Therapist for equipment required for daily living, Physiotherapist weekly to develop motor skills, Osteopathy for spinal, visceral integrity.
Luca’s mobility was severely impacted by cerebral palsy related hypertonic movements and Sarah approached:
The NHS funded Piedro boots at one year and foot splints thereafter, wheelchair assessment (after MRI confirmation of cerebral palsy) for home chair at 2 years old,
Orthopaedic surgeon for skeletal scoliosis assessment, Lycra body suit at 3 years old (then resized very six months),
Applied for daily living allowance (DLA) for slings, nappies & pads for Luca.
Private funding for physiotherapy, osteopathy, 2 wheelchairs and head rests, ceiling hoists, standing slings, 1 adapted bed, bath, sink, changing table…
Speech & language therapists to start Signing with Luca at 1 year old, - application for Accent device board at 6 years old which was provided by NHS
Privately financed a speech assessment at ACE for a new Accent board with Luca’s wheelchair head switches, a camm device and blue tooth receiver
At 17 years old Luca received a new power wheelchair with fittings for Accent 1400 (with parents attending a two training course on how to use the device).
Sarah diagnosis with PSTD (post traumatic stress disorder) and received counselling from NHS when Luca was four years old. Sarah remained full time carer for Luca until 18 years of age and relied on facebook friends group for parent carers support and kinship carers meetings through www.kinship.org.uk
When Luca transitioned to adult funding at 18 years, her personal disability allowance partly funded a part time day carer and this young professional carer was employed by Luca’s parents through adult services.
Luca’s NHS services shifted at 18 years into adult services and she was provided with Local District nursing assessment every 6 months. Luca’s Mental capacity assessments for transition to appropriate day care services continues.
Sarah and Pete continue to be very active in finding and establishing adult day care services with their local authority, Help Luca have day trips with charitable services (such as Scope and Build) and privately funded day trips to increase Luca’s experience with other young adults .