Grace Windram was born in July 2006, 8 weeks before her due date. Weighing just 3lbs 11oz, she spent the first month of her life in Northampton's Special Baby Care Unit.
In 2008, she was diagnosed with Spastic Diplegia Cerebral Palsy (CP), a condition caused by damage to the brain occurring during pregnancy or very shortly after birth (not uncommon amongst premature babies). This condition significantly and permanently affects her movements, most severely in her lower body (along with other complications in upper body, speech and sight). Long term, these impaired movements lead to other complications such joint pains and early arthritis.
At age 4 she was unable to crawl and only learned to do so through several courses of intensive physiotherapy. On her 5th birthday, she was unable to walk (even with a frame) and her condition meant that walking was never going to be possible.
Being an intelligent girl, this was extremely frustrating for her and she would get upset and not being able to walk like her friends or even her baby sister.
Given the limitations of available NHS treatment and equipment, we found ourselves looking at other options to improve her prospects and wellbeing. At age 2, after a large fundraising push, Grace experienced independent mobility for the first time with a specialist paediatric powered wheelchair called a SnapDragon (from DragonMobility). This new found freedom had massive benefits to her social development as well as learning and communication skills.
Two months before her 3rd birthday, Grace attended for the first time an intensive physiotherapy programme at the Footsteps centre in Oxfordshire. Being able to stand freely in the 'Spider' (the apparatus central to the therapy) gave her great joy and a massive confidence boost. The sessions led to real improvements in her core stability and after her third course (shortly after her 4th birthday), we was able to sit safely, crawl and pull herself up into a high kneeling position. Finally she could play safely on the floor with her friends - just in time for starting school!
In the latest and most significant chapter of Grace's life, she flew to the USA for a specialist procedure called Selective Dorsal Rhizotomy (SDR), conducted at St. Louis hospital. This is a highly advanced form of surgery that involves cutting of some of the sensory nerve fibres that come from the muscles and enter the spinal cord. By eliminating the 'bad' movement signals coming from the brain, this procedure permanently eliminates / significantly reduces spasticity (tightness) in the muscles impacted, which results in huge benefits to the individual. Not only is pain reduced, but physiotherapy becomes more effective and gives the individual the potential to be much more physically able. Three weeks the SDR surgery, Grace underwent a second procedure to lengthen the tendons/muscles in her legs and to help undo the tightness caused by over 5 years of spasticity and give her the best possible chance of walking.
Less than a week after her second procedure, Grace independently used a walking frame for the first time. Since returning to the UK she has undergone daily physiotherapy, and two years on walks confidently in her frame and walking sticks. (Her powerchair is gone and is now a thing of the past.) In April 2014, she even took two unaided steps for the first time in her life!
With her ongoing determination and hard work, we hope that Grace will be able to walk short distances all by herself.