Henry was born 13 weeks early on the 19th of September 2016 in a very poor condition due to many complications and as a result had suffered Periventricular Leukomalacia (PVL) which was likely caused by a lack of oxygen or infection at birth. PVL is damage and softening of the white matter within the brain near the cerebral ventricles and we were told this is linked to major neurodevelopmental impairments. No one could tell us what the future might hold, and put simply, you are told to hope for the best but prepare for the worst.

Henry didn't develop physically like his peers and was significantly delayed on his gross motor skills. Following multiple appointments and assessments we were finally provided a diagnosis of Cerebral Palsy in October 2017. This affects his ability to do many of the things we take for granted, like sitting, walking or and moving around independently.

In 2019 you helped Just4Children fundraise over 70k for him to have a surgery called Selective Dorsal Rhizotomy (SDR) which was not available for him on the NHS. This massively helped to reduce spasticity (tight and stiff muscle tone) in his lower limbs, improve mobility and increased independence.

Unfortunately, since that operation Henry has had to have multiple additional orthopaedic operations due to how his muscles and bones grow in a non-typical way. He recently had one of the most significant orthopaedic surgeries going - bi-lateral hip surgery – this really impacted his progress, reducing his mobility that he worked so hard to achieve. His rehabilitation from this was tough and we are still working on him getting back to where he was before. He has also recently had hamstring lengthening.

Each time Henry undergoes one of these surgeries it requires intensive specialist therapy and equipment to regain muscle strength and mobility to pre-op levels or to maximise the impact.

Despite all his challenges Henry is the happiest, most determined little boy with the best sense of humour – he takes it all in his stride and really is an inspiration to us all.

This new page has been set up for us to continue to raise funds for all the specialist therapy and equipment he requires which is unfortunately not available on the NHS.

Thank you.

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