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Lewis Edit

Meet the incredible Lewis! His mum Samantha tells their story

Lewis was born in February 2004, and he was adorable. He did not show signs of illness (aside from usual baby/toddler gripes!) until February 2006 when he had a slight limp. A doctor suggested Lewis might have a common toddler condition called Irritable Hip Syndrome and that we should rest him as much as possible. At that time Lewis was attending nursery as I worked full-time, and so Lewis became the centre of attention at nursery, sat in his little chair while all his friends brought toys over to him! I think he loved it! After a few weeks the limp went, and we felt the problem had passed. At the end of May 2006 Lewis woke up unable to stand or walk.

This began a very worrying time for us, appointments to try and find what could be wrong. In July 2006 the seizures started (at least that is when we first noticed them). Several hospital admissions and an MRI in August 2006 came back with everything normal. Lewis went into a 6–8-week cycle of seizures and after each seizure Lewis would lose another ability.

By October 2006 Lewis could barely sit up. He couldn’t use either of his hands, he could no longer even crawl and his speech and eating were suffering. By Boxing Day 2006 Lewis could no longer eat or speak and could not even support his own head. All this in 6 months. In January 2007 Lewis finally had an NG tube inserted to feed him. We came home from a prolonged stay in hospital with a different Lewis, a very fragile Lewis, and we did not know how long we would have him with us with everything shutting down. It was around this time that Lewis was tested for Batten disease. This came back negative, and we were so relieved.

So our life with ‘disabled Lewis’ began and as every parent will know, something that shocks us to our core one day becomes normal life almost the next. Many more tests took place over the months and years, and all gave the same ‘normal’ results.

In 2011 Lewis had a brain biopsy at Alder Hey hospital and again Batten disease was mentioned, but again the results were negative.

In 2013 due to increased seizures (caused by a surgical procedure going wrong) Lewis was admitted to Critical Care for 6 months and we came home from that with another ‘new’ Lewis complete with tracheostomy, ventilators and a lot of other equipment.

In 2014 Lewis finally received a diagnosis via the Deciphering Developmental Disorders micro-DNA study. Around 2.5 years of analysing Lewis DNA (and ours – Mum and Dad – too) and we were finally called to see the genetic specialist.

The genetic specialist said a lot of long words which didn’t mean very much. KCTD7 was written on a piece of paper for us to take home. I still have that piece of paper. As we were about to leave, I said ‘well at least you didn’t mention Batten disease’. At that point we all sat down again, and the genetic specialist explained that Lewis did indeed have a disease very much like Batten disease – he had a disease known as a neuronal ceroid lipofuscinosis – another long word!

It was only a few weeks later when Lewis’s neurologist (the incredible Professor Santosh Mordekar) called us and explained that we finally understood this was indeed a form of Batten disease. We now know Lewis has Batten disease CLN14.

In 2014, Lewis was 10 years old. The expected life span of someone with CLN14 was suggested to be 10-12 years old.

Lewis is now 20 years old.

Lewis brings joy every day. His smile, his laughter, his so expressive eyes – our catchphrase for many years has been ‘Everybody Loves Lewis’ and it’s true. Everybody who meets Lewis can’t help but be captivated.

Like all our children living with batten disease, Lewis is literally an everyday hero, an inspiration, the epitome of how we should all live – for the joy in every moment of our lives.

Tomorrow is never promised, but today we do have all the time in the world.

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