Henry George Ford was born on 6th May 2004 at the Royal United Hospital, Bath. He was born prematurely at 35 weeks (scan dates) or 37 weeks (calculated dates) and stopped breathing shortly after delivery. He was resuscitated and spent a short time in the NICU special care baby unit of the RUH. At around 4 months his parents noticed that his eyes did not follow objects and he did not seem to focus. He was referred to the Bristol Eye Hospital and then the BRI where he was given an MRI scan. The results from the scan indicated Periventricular Leukomalacia (PVL) which commonly results in both Nystagmus and Spastic Diplegia Cerebral Palsy.
Henry is unable to walk unaided and uses a Kaye frame. The Kaye frame enables him to get about at a very slow pace but he gets very tired very quickly and is unable to go very far. He now has a wheelchair to increase his mobility. To enable Henry to use his frame, he needs to have daily physiotherapy to ensure that his legs do not stiffen up. This physiotherapy has become a routine part of Henry's day since beginning a programme at the Brainwave Centre in Bridgwater, Somerset. Although he has an excellent NHS physio who he sees fortnightly, Henry’s family and friends also assist to ensure that the treatment is done regularly. He also wears orthotic splints at night and has his breakfast in a standing frame which give his muscles an important stretch.
There is no cure for Henry’s Spastic Diplegia or Nystagmus. At present in the UK, the NHS can only offer ways to manage the condition until complex orthopaedic surgery is required, usually approaching the teenage years. This surgery is required to release spastic muscles, lengthen tendons and correct bone deformations caused by the spasticity.
Despite Henry’s disabilities he is a delightful little boy with a wicked sense of humour who has just started mainstream school at St Benedicts in Midsomer Norton. Due to his condition he is usually very shy, especially with strangers, but his confidence is growing with his time at school and he is really enjoying his time there. His family are determined to give him the best quality of life available to him and will do anything to raise money to enable them to maximise his potential. More information regarding Henry can be found by clicking the links.