Lawrence (also known as Orange) who is two has complex disabilities and epilepsy. He isn't able to walk or talk but there is no name to describe his condition. It is thought that he has a genetic syndrome so rare that doctors haven't yet been able to identify it.
In his two years Lawrence has visited hospital many more times than most toddlers have been to playgroup. He has had MRI brain scans, heart scans, kidney scans, chest x-rays, chromosome testing, repeated neurological, audiological and opthalmic tests, EEGs, invasive surgery and has been admitted to the High Dependency Unit for seizures that cause him to stop breathing.
We do not know what the future holds for Lawrence, whether his life expectancy will be shortened, whether he will ever learn to walk or talk, whether he will ever live independently.
While his condition remains unidentified, it's impossible to answer these questions, so we have to help him as best we can to live a full, happy life.
With Tree of Hope we are raising money to buy him a specialist bed, since he's outgrown his cot and isn't safe in a regular bed in case he falls or has a seizure. We are also hoping to kit out his bedroom with a sensory play area to help him gain stimulation and intellectual development through play, the way a typical two year old would with regular toys.
Lawrence cannot walk or crawl, but being independently mobile is vitally important to a child's cognitive development. Thankfully there are some amazing pieces of equipment out there now that can help children like Lawrence access their world. One of these is the Bugzi, a very cool, very small wheelchair for indoor use that he can learn to operate with a trackpad or joystick.
Lawrence needs daily therapy to aid his development, both physical and cognitive. We have enrolled Lawrence on the Snowdrop Programme, a private therapy programme that works on the theory of 'neuroplasticity', to help him achieve his full potential, so we are also fundraising to enable Lawrence to stay on this programme long-term.
Caring for Lawrence is an absolute joy, he is a very cheeky, cheery little chap who has a burgeoning sense of the ridiculous and sees real humour in life. It will mean the world to us to be able to help him achieve as much as he possibly can, thank you for any assistance you can give in helping us do that.
Should we exceed the target amount (or if we do not raise enough funds, or if they cannot be used for any other reason) the funds raised will go to the general funds of Tree of Hope to assist other sick children.
You can read more about Lawrence by visiting http://orangethisway.blogspot.co.uk
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