Rachel Daley
Histio UK fundraising Team 'Astro' Jack Daley
Fundraising for Histiocytosis UK
Story
Back in September 2014 our lives were turned upside down when Jack (then just 3 years old) was diagnosed with a rare condition called Langherhans Cell Histiocytosis.
Langerhans Cell Histiocytosis (LCH) is the most common of the histiocytic disorders and occurs when the body accumulates too many immature Langerhans cells, a subset of the larger family of cells known as histiocytes. Langerhans cells are a type of white blood cell that normally help the body fight infection. In LCH, too many Langerhans cells are produced and build up in certain parts of the body where they can form tumours or damage organs. It is not contagious, nor is it believed to be inherited.
Jack has what is called multi-system low-risk diseases at it effects his bones (he had three lesions in his skull on diagnosis) and his pituitary gland has disease present resulting in a secondary long term condition called Diabetes Insipidus which he is likely to live with for the rest of his life.
On 6th October 2014 he started a 12 month chemotherapy and steroid protocol. The chemo he has is called Vinblastine, for anyone who knows us personally you will know why the 'blast' bit makes us smile!
Jack completed his 12 month chemotherapy protocol and had ‘no evidence of disease' for 2 and a half years. In February 2018 after a routine check up scan we found out that the disease had re-activated and he is currently undergoing a 24 month protocol to kick its head in once again. There are many others, including some really tiny babies and even adults who are fighting this disease. We want to do everything we can to help them and one of the ways we can do this is through fundraising for the charity.
We are raising money for Histio UK who are researching the disease with the goal of one day finding a cure.
You can read more about the disease here http://www.histiouk.org/nd
Langerhans Cell Histiocytosis (LCH) is the most common of the histiocytic disorders and occurs when the body accumulates too many immature Langerhans cells, a subset of the larger family of cells known as histiocytes. Langerhans cells are a type of white blood cell that normally help the body fight infection. In LCH, too many Langerhans cells are produced and build up in certain parts of the body where they can form tumours or damage organs. It is not contagious, nor is it believed to be inherited.
Jack has what is called multi-system low-risk diseases at it effects his bones (he had three lesions in his skull on diagnosis) and his pituitary gland has disease present resulting in a secondary long term condition called Diabetes Insipidus which he is likely to live with for the rest of his life.
On 6th October 2014 he started a 12 month chemotherapy and steroid protocol. The chemo he has is called Vinblastine, for anyone who knows us personally you will know why the 'blast' bit makes us smile!
Jack completed his 12 month chemotherapy protocol and had ‘no evidence of disease' for 2 and a half years. In February 2018 after a routine check up scan we found out that the disease had re-activated and he is currently undergoing a 24 month protocol to kick its head in once again. There are many others, including some really tiny babies and even adults who are fighting this disease. We want to do everything we can to help them and one of the ways we can do this is through fundraising for the charity.
We are raising money for Histio UK who are researching the disease with the goal of one day finding a cure.
You can read more about the disease here http://www.histiouk.org/nd