Ben's epic journey with acute myeloid leukaemia (AML)

A message from Ben's mum, Ginny

“It’s almost six months since Ben’s diagnosis with acute myeloid leukaemia and Lyme disease through to his blood stem cell donation and it’s really gone by in a blur. You barely have a chance to digest the information before embarking on a life-saving journey. The NHS staff in all three hospitals we’ve attended have been amazing and the support for our family from several charities has been equally much appreciated.The new friendships we’ve made along the way have been cemented through this process and we are continually overwhelmed by the support we’ve had from our own friends and family over recent months.

We cannot begin to find words of gratitude to express the love we have for the unrelated donor, who, in a moment of kindness has saved our son’s life and by extension, our family.

We are looking forward to hopefully going home sometime in the New Year, where we will continue Ben’s Epic Journey to full recovery.

Our lives have changed through this experience; it has been very hard at times and I know every parent of a child going through cancer treatment will understand the fears we all face every minute of every day. It is a surreal journey and the impact on siblings as well as the patient can take its toll.

However, knowing there are people out there willing to donate their stem cells gives us hope that the children, teenagers and adults who are still out there waiting, will find their magical match. To receive the news saying ‘we’ve found a matching donor’ is overwhelming to hear. It gives you courage and strength to keep putting one foot in front of the other and to know there is someone so special out there looking out for your family. Recently we reached a really significant milestone and received the news that Ben is 100% donor blood, which means that all the donated stem cells are settled in and creating new blood cells, which is amazing.

Stem cell donation is crucial for all sorts of blood cancers. We are so blessed to have found our magical match and we know of others who are still waiting. You can change that. You can help.” 

How you can help someone like Ben survive blood cancer

By signing up to become a blood stem cell donor, you could help make sure someone like Ben, can have a second chance at life.

Bens Story

Ben, from West Sussex, enjoys Minecraft, and designing crazy and creative worlds with his younger sister, Rose.  He loves steam trains and was due to go to Ffestiniog railway in Wales to celebrate 125 years of the Hunslet engines with his Dad, unfortunately he was in hospital that weekend. 

Ben's diagnosis with acute myeloid leukaemia 

In June 2018, Ben was diagnosed with acute myeloid leukaemia and was searching for a blood stem cell donation. When he has the energy, Ben enjoys cycling and bouncing on the trampoline. During his time in hospital he has been missing his two dogs and cats as well as his two sisters. Initially, the family was told Ben would need four rounds of chemotherapy. They were then told that a blood stem cell donation was his best chance of recovery. Neither Ben’s mum, dad or two sisters were a match so were unable to donate their blood stem cells. Instead, the family was relying on a selfless stranger to provide a blood stem cell donation. 

About Ben

Ben’s mum, Ginny, said Ben “dreams of growing up and becoming a Lego Designer.” He is a strong minded, generous little boy who loves to make people laugh and has a sharp wit, when he’s on good form. The family is looking forward to being a family of five again in the months to come and to Ben regaining his energy after his treatment.

Follow Ben's epic journey and get involved 

You can follow Ben's progress on the families blog page or by following #bensepicjourney.