Our 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..

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.

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.

Dylan then relapsed in his lungs and spine in September 2019 then  in January 2022 in his spine and skull. He received Chemotherapy again to treat this and had a metal plate placed over his skull damage. He finished treatment in February 2023 however relapsed for the fourth time in January 2024. 

Dylan currently has LCH in his spine and skull again but now also on his skin and in his pituitary gland at the base of his brain. This makes him high risk for developing Diabetes Insipidus, hormone problems and future brain damage from LCH such as neuro degenerative disease.

We are fundraising for Children with Cancer UK as they’ve given us some wonderful days out and invaluable support throughout the last eight years of this battle. Some of the special things they have done for Dylan and our family are worth more than any amount of money in the world so we want to give back as much as possible. 


A message from the charity.. Our vision is a world where every child and young person survives cancer. For 35 years, Children with Cancer UK has funded much needed research into the causes of childhood cancers, and the development of better, kinder treatments as well as funding initiatives that support children and their families through cancer treatment and beyond.Our work has contributed significantly to a marked increase in childhood cancer survival rates and improved quality of life for patients.