Please share Lewis page. We need to raise awareness of NCL. Lewis deterioration is typical of BD but after two tests (4 years apart) we were told Lewis didnt have BD. He does - its just a very very rare version. On 8 July 2014, Lewis was diagnosed after over 7 years of being undiagnosed. Lewis has Neuronal Ceroid Lypofuscinosis on the KTC07 gene. NCL is also known as Batten Disease. There is no treatment or cure. Lewis was fine until just before age 3 and then within six months his body had regressed so that he was less able than a newborn baby. He had to be fed via a tube directly into his stomach. He started having epileptic seizures and our lives changed completely. In 2013 Lewis was admitted to hospital with a severe stomach bug. This resulted in intubation and transfer to ICU. It was discovered his bowel and stomach and abdomen had grown together due to an error in the replacement of his stomach tube in 2010. The tummy bug he had caught allowed the contents of his bowel to be forced through the tunnel into his stomach. This required surgery but in Lewis weakened state and with a mix up over medications, Lewis ended up remaining in ICU/HDU for six months with collapsed lungs, several episodes of status epilepticus and various infections. His lungs could not cope with all this and in October 2013, Lewis had a tracheostomy tube fitted to allow him to breath. He also requires a ventilator to assist his breathing. He has 100 degree plus scoliosis and dislocated hips (exacerbated by restricted positioning and not being able to have regular stretches or physio whilst in hospital). Lewis also suffered a shoulder fracture whilst in ICU due to particularly violent seizures. This has never healed and the bone has dissolved so Lewis is also in constant pain from this. Our boy is SO brave. Every single day he deals with unimaginable pain and discomfort and yet still he smiles. Love you to the stars and back Lew Lew xxxx
Posted on: Sun, 20 Jul 2014 06:30:14 +0000
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