Just4Children are fundraising for SDR surgery so that Sienna will have improved independence, mobility and quality of life.
Sienna is aged 5 from Newport in Wales.
Sienna and her twin sister Lyla were born 12 weeks prematurely weighing just 2lbs 4oz and 1lbs 11oz. When Sienna was 5 days old she suffered a devastating brain injury due to prematurity resulting in her having Quadriplegic Cerebral Palsy, which affects all four of her limbs.
Sienna has had a rough ride with her health and is often hospitalised with respiratory infections requiring complex medical care.
Sienna is growing increasingly conscious of her limitations and often gets upset that she is unable to run around with her twin sister and friends. She is fully dependent on family and her one to one in school to meet her mobility needs, including the use of her feeding tube. Sienna loves driving around in her power wheelchair that she calls Winnie, but ultimately our dream is for her to be able to walk more independently using her walking frame.
Sienna is always battling against spasticity (stiffness) which limits her mobility and often causes painful spasms resulting in many sleepless nights.
There is life changing operation called SDR surgery (Selective Dorsal Rhizotomy) which would remove the stiffness from her legs. This would give Sienna the opportunity to be more mobile and live with less pain. The surgery involves cutting the sensory nerve fibres in the spinal cord which sends incorrect signals from her brain to her muscles. This surgery would give Sienna more control over her body and would prevent future problems caused from spasticity such as repeated surgeries and significant pain.
Unfortunately due to Sienna’s high level of Cerebral Palsy the operation is not funded on the NHS, despite it being of benefit to many children of a similar level.
We have been accepted at the Great Portland Hospital in London for SDR and need to fundraise the £70,000 for the surgery and resultant therapy to give Sienna a more independent and happier future.