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My son was seriously ill in 2014 and ended up in a wheelchair and tube feed. He was 8 but wearing age 4-5 clothes. It went on for months before the correct diagnosis and he was wrongly treated for various other conditions along the way. He lost half his body weight. Thankfully he had the dilation surgery and a course of strong antibiotics to clear his lungs. He has since had another dilation , today he told me that it feels like it is coming back, I'm totally heartbroken for him as he dreads more surgery and it just doesn't seem to last long after. Are there any other parents with children suffering from this awful condition. I would love to have contact with someone who understands as its so rare in children. Thank you 😊
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