About Us

On 25th April 2003 my 15 year old Son was diagnosed with Chronic Myeloid Leukaemia. It came as a complete shock as he had always been a picture of health with hardly any days off school from illness. At that particular time I knew absolutely nothing about Leukaemia so when we were told he had CML, which was quite rare in children, I decided to look further on the internet. After doing this and scaring myself half to death reading lots of horror stories, I came upon a website cmlsupport.org . This was my life saver and I gleaned most of my information from this website by posting question after question. The people on this site were all carers or patients of CML and were so friendly and informative. When Aaron was undergoing long stays in hospital these people became almost like my family and I would be posting my questions daily and eagerly awaited responses.

The only downside really was the fact that this website was really made up of adults with CML, which is understandable really as its mainly an adult disease, generally affecting people with an approximate age of around 55 to 60 and therefore their treatment protocols were somewhat different than what we were being advised for Aaron. So, with this in mind there really wasn’t anywhere else to go to get actual information on children with CML. Aaron’s consultant was excellent and explained things in detail to us but sometimes couldn’t give us any answers due to there not being many cases previously to refer to. She took advice from several ‘adult’ consultants and that was the way we all agreed on a treatment plan for him.

Aaron was diagnosed in Accelerated Phase and he progressed rapidly into Blast Crisis (see About CML section for more info on this) and the outlook was not good. He underwent a Bone Marrow Transplant from a Matched Unrelated Donor (MUD) from the Anthony Nolan register and despite all the odds came through it. He had many complications along the way (CNS disease, Graft Versus Host of the Gut/Mouth/Skin) and his weight dropped dramatically low. However despite all this he is now looking forward to starting at Aston University in September and is enjoying life as a normal 19 year old.

This website has been set up to help all patients, parents and anyone who has been affected by CML.