My name is Lisa and me and my wife are trying to raise money for my cousin Lewis. We would love to be able to grant Lewis his wish of staying with his favourite animals the giraffes at Yourkshire Wildlife park giraffe lodge. My lovely cousin Lewis was born in Yorkshire on 28th February 2004, baby brother to my cousin Samuel who was born and raised in London but moved to Yorkshire in 1995. (We now know that 28th February is Rare Disease Day). Lewis grew well and did all the normal things a baby should do, just perhaps a little bit later than usual. His speech didn’t develop properly so he had to attend speech therapy when he was 2 years old. Also when he was 2 years old he began to limp and seemed unable to walk properly on his left leg. A visit to our GP and a visit to the hospital for an ultrasound found nothing wrong and after a few weeks the limp went away. That was in May 2006. In June 2006 Lewis could no longer stand up or walk and so we faced more GP and hospital visits. Between June 2006 and December 2006 Lewis then declined rapidly and began having seizures. By January 2006 Lewis could not even sit up unaided or support his own head, he could not speak and he could not eat. Nobody could tell why. From January 2007 until July 2014 Lewis remained reasonably stable, he had regular seizures which were controlled by medication, he was unable to move or speak or eat and so began being fed through a tube straight into his tummy. During this time Lewis continued to have tests to try and find out what was wrong with him, why he had deterioriated from a normal 2 year old to a completely disabled 3 year old and onwards. In 2013, due to uncontrollable seizures, Lewis was for the first time admitted to critical care at the childrens hospital where him and mum remained (intensive care and high dependency units, between the two) for six months. Due to some complications in the hospital Lewis spent a considerable time on a ventilator and so it was decided he should have a tracheostomy and a ventilator at home so he could leave the hospital and get back with to be cared for where he was happiest and safest. In December 2013 Lewis and mum came home with a lot of equipment, with a 24 hour package of nursing and healthcare, and still no reason why Lewis was like this. In July 2014 Lewis received an appointment to see a genetics consultant who had submitted DNA from Lewis, mum and dad for the DDD study (deciphering developmental disorders). This study took several years to carry out and they finally had a result – Lewis and mum and dad all had a gene mutation which was newly recognised and incredibly rare. Lewis has Neuronal Ceroid Lipofuscinosis, also commonly known as batten disease. Lewis’ mutation is so rare that there only a handful of children in the world with the same form of batten disease and no information available about them. Lewis’ form of batten disease is called CLN14. There are several forms of batten disease (1-14, but no number 9) and they are all terminal and cruel. Lewis mum was able to meet two other families who have a child with batten disease – one in India and one in Panama. Sadly the little boy in India passed away very recently. With Lewis being on a form of ‘life support’ he has lived a lot longer than medical professionals believed possible. On diagnosis, Lewis family were told he may live to 11 or 12 years of age. Lewis is now, miraculously, 19 years old! Lewis still has terrible seizures, he gets chest problems easily, he is in constant pain with hip and spine malformation, but he knows how to smile, he knows how to laugh and he enjoys his life and the people around him who love and adore him. Lewis’ favourite activity is visiting the giraffes at the local Yorkshire Wildlife Park. Giraffes are his favourite and Lewis and mum have an annual pass so they can go as often as they like. Lewis loves giraffes so much because they are easy for him to see from his reclined wheelchair and they are always coming over to see him when we arrive at their enclosure. Lewis love of giraffes means that he has a huge collection of giraffe teddies and ornaments, pictures and drawings, as well as lots and lots of cards from the lovely people who have supported him from the incredible charity PostPals (postpals.co.uk) since Lewis was 3 years old. As Lewis has so much equipment and such ultra complex clinical needs, it’s very difficult for him to travel away from home. When we saw that East Midlands Safari Park had a giraffe lodge where you can stay in a chalet WITH the giraffes, we knew this would be an incredible thing for Lewis to experience, but the cost is massive and the lodge is fully booked for the entire year! We really hope that by raising awareness of Lewis’ love of giraffes and how little time he may have left because of his devastating illness, that we can try and make this or something equally giraffely amazing happen for Lewis this summer 2024.
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