Our 4 year old son, Dylan suffered a collapsed lung on Christmas Day 2015 and it was later discovered via CT scan that he has severely cystic lungs. The results from a biopsy taken in January (after a second lung collapse) came back as Pulmonary Langerhans Cell Histiocytosis on 10th February 2016..
We had attended our regular playgroup that day and at approximately 10am Dylan went from being perfectly fine to deteriorating within minutes needing CPR whilst awaiting the ambulance team.. He had a bilateral collapse and he fought for his life for the first 48 hours before stabilising. Then after six weeks of relative stabilty he caught three different infections whilst neutropenic and had to be intubated and ventilated again, almost losing his life numerous times. He finally was extubated after just over three weeks and continued an 18 month course of Chemotherapy which he finished in July 2017.
Langerhans Cell Histiocytosis is a rare cancer that affects 1 in 200,000 children.. Pulmonary LCH rarely affects children and is closer to 1 in 10,000,000 so we are trying to raise awareness and vital funds for research into this rare disease and other Histiocytosis diseases.
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We fund research & information support to improve the lives of patients & families
Charity Registration No. 1158789