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Lawrence’s story part 3

10th December 2014

At around this time Lawrence lost the ability to crawl and was unable to get himself up and down stairs. However, having accepted the changes to his body, he started to develop a completely different personality from the one he had had before. The ‘old’ Lawrence had been quite a shy child – but the ‘new’ Lawrence was very gregarious and loved interacting with people. He quickly found that by making funny faces he could make people laugh and he loved to be the centre of attention. It was really wonderful to see him having so much fun and also to see how much everyone who met him loved him. The next couple of months were probably the happiest of Lawrence’s life – he spent most of the time laughing. In April Lawrence started to have bouts of pain. He had had several attacks of what appeared to be muscle spasms during the night over the past months. However, this pain we felt to be in his stomach and thought that it was probably trapped wind. On two occasions he was in so much pain that we took him to hospital. In mid May Lawrence caught yet another sickness bug. After this he stopped talking altogether and started to have difficulties eating and I had to mash food up for him. At the end of May we were back in hospital with yet another sickness bug. At this stage Lawrence started to take morphine to try to help with the pain. By the beginning of June the eating and drinking was a major problem and Lawrence had lost a lot of weight and weighed only 19kg. He seemed in a lot of pain after he had eaten, and was obviously suffering from reflux. Trying to get him to drink anything became extremely difficult and we would consider ourselves lucky if he had drunk more than just a few sips of liquid throughout the day. Towards the end of June Lawrence went into hospital to have a gastrostomy – a week later he was back in as we discovered that during the initial operation the surgeon had pierced his colon. During the first operation they discovered that Lawrence’s stomach was in a very bad way with a lot of damage and ulcers. Lawrence’s muscles were also rigid and it was very difficult to get any part of his body to bend. He only had professionally administered physiotherapy once a week, though both we and his carer at school tried to give him it. He had little control over his limbs though he could move his head.

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We played a Mixed game against LSE today and had a 6-10 loss in a very well fought and fun match! Thank you LSE for being great opponents today! Also, as in the photos, we have all painted our faces the colours of Rare Disease Day which is upcoming on the 28th to show support for ALD Life, the charity who help patients and families of Adrenoleukodystrophy and Adrenomyeloneuropathy. Please help us to provide better awareness and find better treatments. You can help by raising awareness and taking part or donating by texting 'ALDL18 £5' to 70070. Or you can donate on Just Giving here - www.justgiving.com/campaigns/charity/aldlife/rarediseaseday2018 We want anyone and everyone to paint their faces and pass it along! Man of the Match: Aidan Women of the Match: Sarah, Pip, Jess, Amy #LUSL #Ultimate #Ultimatefrisbee #Outdoors #Outdoormixed #Rarediseaseday #warpaint #blueandwhitearmy #Stmarys #simmies #LSE #Beavers #Ostrich #HalfMatchMan #Substitutionsmatter

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