Sienna is a determined, amazing and funny 5 year old little girl from Peterborough who is on a mission to raise money for both pre and post physiotherapist following SDR surgery as well as equipment Sienna may require.
Sienna was born at 31 weeks following premature preterm ruptured of the membranes. Despite a smooth ride in the local neonatal unit, following discharge life for Sienna became more difficult. Crying in pain for most of the time, seeking help from medical professional and missing milestones resulted in Sienna being diagnosed with Cerebral Palsy at 12 months of age. At 16 months old (November 2017) an MRI was performed which showed Sienna has extensive PVL brain damage, which consultants commented was shocking.
Sienna’s life so far has been numerous hospital appointments including speech and language, physiotherapy, occupation therapy, orthopaedics and many procedures. Daily Sienna is on strong medication to control the tight muscle tone which has resulted from her disability as well as the pain this causes. Despite the best efforts of the medical team to help control Sienna’s pain and discomfort, Sienna still suffers daily.
In July 2021, Sienna was seen by Great Ormond Street Hospital which advised that Sienna would benefit hugely from having Selective Dorsal Surgery as this would not only improve her quality of life, improve her pain resulting in a reduction in her strong medication as well as enable Sienna to improve her mobility and reduce her overall muscle tone. Despite how life changing this surgery would be for Sienna, Sienna does not meet in tight NHS criteria required for NHS Funding.
Between July 2021 and July 2022, we set a mission to raise money for Sienna to have the life changing surgery alongside the intensive rehabilitation that Sienna will be require to participate in to ensure the maximum movement and benefits of the surgery can be fulfilled.
In July 2022, Sienna revisited Great Ormond Street Hospital. At this appointment we was told Sienna still does not meet the criteria for NHS funding however the hospital has some charitable funding in place to cover children who who benefit from the surgery. Thankfully the consultants, physiotherapist and surgeon have decided that Sienna will be one of the children to receive the SDR surgery through this funding. However the hospital have recommended that as a family we continue to raise funds for the physiotherapy both pre and post surgery as well as any equipment that will benefit Sienna to reach her maximum movement potential.
As Sienna’s family we are asking for all your support going forward.
Thank you so much for reading out story.
Sienna, Her parents and brother xx
