Our journey

Henry was born prematurely at 28 weeks in 2014, weighing just 2lbs 14oz, and was immediately taken away from us to the Neonatal intensive-care unit.

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The first 8 weeks of Henry’s life were spent in hospital. We sat by his incubator for hours each day, unable to help for the most part. As we lived locally to the hospital we weren’t given a room, so each evening we were forced to leave and return home without our son. Every night we’d see his new nursery room, empty.

Just before we were discharged from hospital, the doctors found during their routine checks that Henry had a rare head condition called Sagittal Craniosynostosis. The condition is caused by plates fusing in the skull prematurely (before the head has finished growing after birth). This is currently under review by a fantastic team at Alder Hey Children’s Hospital and we’re hoping that it won’t require surgery.

There is no connection between craniosynostosis and cerebral palsy. Luckily, both conditions aren’t progressive - so they won’t get worse - however the cerebral palsy will continue to impact Henry’s development as he grows.

Although his cerebral palsy wasn’t diagnosed for a further two years, the signs were there from early on. We began to notice that he was late with almost all of his development milestones, particularly sitting up and crawling.

Countless hospital appointments, CT and MRI scans later, finally receiving the diagnosis of cerebral palsy was difficult to take. Although, by that stage, we were expecting the outcome, hearing the consultant say the words was devastating.

What is cerebral palsy

Cerebral palsy is caused by a problem in the parts of the brain responsible for controlling muscles, meaning it affects his movement and co-ordination.

The condition can occur if the brain develops abnormally or is damaged before, during or shortly after birth. Only around 500 children a year are born with cerebral palsy in the UK, 40% of those due to prematurity.

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Henry’s cerebral palsy is the most common form, spastic diplegia, meaning that his legs are predominantly affected with only minor impact on his arms. Henry’s legs have increased muscle tone - causing muscle stiffness, balance and co-ordination problems, which has left him unable to stand or walk independently.

For people that meet him, Henry’s happiness and determination is clear to see. However he can easily become frustrated and upset when his disability stops him from taking part in activities that other children his age are doing. He is desperate to run about with his friends but his legs won’t let him.

How cerebral palsy is treated

The NHS only entitles children with Cerebral Palsy to minimal physiotherapy sessions. Henry attends a specialist nursery once a week where he receives some physio relief. We also perform physiotherapy at home on a daily basis, encouraging his leg muscles to relax.

There is no cure for Cerebral Palsy, but there is a life changing operation available called Selective Dorsal Rhizotomy (SDR), which is a 5 hour procedure where the nerve endings in the spinal cord are stimulated to separate the nerve roots - reducing tightness in the leg muscles.

This is the only treatment that permanently removes spasticity in the legs. The spasticity causes a lot of pain and discomfort for Henry and means that even the simple things aren’t possible. We have seen examples of the results from this surgery and the results were amazing.

Unfortunately SDR treatment is not currently offered on the NHS, which is where this campaign begins.