As a baby Ella was always very quiet and not interested in crawling much, preferring to look at books, however, after she turned 2 years old and was still not walking, she was referred to the community paediatrician for review.
The paediatrician requested a lot of assessments by specialists at Great Ormond Street Hospital and, after a number of MRIs (brain scans), blood tests and examinations, Ella was diagnosed with spastic diplegia, a form of cerebral palsy.
Spastic diplegia affects the nerves between the brain and the leg muscles causing some of the muscles to always be tightened a bit especially the thigh and calf muscles. This makes standing and walking very difficult for Ella – the tight calf muscles make her stand on tiptoes unless she wears special shoes and the tight thigh muscles make it difficult for her to walk even short distances with her walking frame before she gets tired so she normally has to sit in her wheelchair whenever we go out.
To reduce the tightness as much as we can Ella has daily stretches at home and every few months she has Botox injected into her hips, thighs and calves followed by sessions of daily intensive physiotherapy.
By having this operation while she is still young Ella still has a chance of being able to walk independently and we may be able to avoid the need for extra surgery in the future. Without it her muscles will continue getting tighter and more uncomfortable and the constant tightness and lack of walking will cause her other problems with her bones and joints that will require considerable surgery in the future.