Nov 25, 2019
Andy & Tom sit down with Rob Fearns from Charlies Chance Foundation.
Our son Charlie was diagnosed with Acute Lymphoblastic Leukaemia (ALL) on the 6th March 2009 when he was just 3 years old.
He underwent chemotherapy for 3 years and in 23rd May 2012 he was given the all clear only for this awful disease to come back to haunt him. After extensive meetings and consultations with the Doctor’s they decided the best thing for Charlie was to offer him a bone marrow transplant. Charlie began treatment which entailed months of chemotherapy, total body radiotherapy and endless lumber punctures to get him in the best possible shape to make the transplant a success.
After months of searching for a bone marrow donor for Charlie we were delighted to hear Anthony Nolan had found a match for him in December of 2012. A selfless, 22 year old German Male came forward as a donor for Charlie and we just cant thank him enough. On the 25th January 2013 Charlie had the transplant, he was in isolation for 8 weeks and away from his little brother which was hard for him but it went extremely well and within 12 weeks he was home.
It was a moment we will never forget, feeling that we finally had our little boy home but unfortunately just over 3 years post transplant we got the dreaded news that devastated the whole family. Charlie had relapsed for a second time, that was the hardest conversation we have ever had. We were absolutely devastated that Charlie had relapsed but this time it was in the central nervous system. So after letting it sink in the consultants came up with a interim plan. That plan was that Charlie would be fitted with a device in his brain called an Ommaya reservoir so that chemotherapy could be given direct into the brain fluid and control the leukaemia until they came up with a more permanent plan. Our consultant from Alderhey found a pioneering treatment called car T-cell therapy which uses your own immune system to fight the cancer.
This new treatment was available in Great Ormond street hospital but unfortunately Charlie’s case was put forward to a medical board but was rejected as he didn't meet a certain criteria. Our last hope was to now look further afield for this treatment and that’s where we found Seattle children’s hospital. Obviously going for treatment abroad comes at a cost and thats where we started our fundraising campaign. When we approached Seattle children's hospital about Charlie receiving the treatment they gave us a figure of $180,000!!!!!!!
How on earth are we going to get that amount of money? With all of our incredible family, friends and amazing supporters we got the money in just 28 days. We had some really big cash donations but our local support was relentless, from dusk till dawn people were out in their droves getting us money we needed how ever they could, from t-shirt sales to bucket collections. We boarded that American Airlines plane on the 26th July 2016 and spent a very difficult 3 months watching our son go through so much but to then get Charlie home and have him in remission was literally a dream come true.
We as a family will be eternally grateful for all the support we received but since we have gone through our fundraising campaign we have noticed that not everyone going through this process has the support that we have……so that where Charlie’s Chance comes in.
We had lived this life, Raised this money and had the support of many so now it is our turn to show our gratitude and to help others is our situation.