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Su0906
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Thanks Helen
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If there are any pare to that have suffered a loss post bmt, ideally lung gvhd but not exclusive I'd love to.connect.
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Update - my beautiful son, aged 20, died on the 3rd August 2023 from type 2 respiratory failure due to lung gvhd. We are heart broken.
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My son has severe chronic pulmonary gvhd. He started on rezurock approx 3 weeks ago. The Royal marsden are his primary carers. The cost is £7.5k per month and we did a go fund page to help raise funds. We have raised enough for 5 months and then hope it will either be nhs approved or if not, they will agree to fund the…