Samuel George Cumpson is 9 years of age, and he was diagnosed with Black Fan Diamond Syndrome when he was only a few months old.
Black fan anaemia is a rare genetic condition where the bone marrow is unable to make sufficient red blood cells, a condition that Samuel would not survive if he wasn't treated.
As Samuel's bone marrow is unable to produce its own red blood cells, Samuel has had to visited hospital every four weeks since birth to receive blood transfusions, which have allowed Samuel to move through his childhood as best as his condition would allow.
Unfortunately, the blood transfusions were never going to be a long-term solution to aid Samuel, as the transfusions themselves have brought about health complications that are not sustainable in the long run.
The only thing that would enable Samuel a cure and live a disease-free life is a bone marrow transplant.
Anthony Nolan have miraculously found Samuel a 100% donor match which will potentially save Samuel from the painful treatments he has to endure.
Samuel would have had the transplant a long time ago now, but due to the build-up of iron in his liver caused by the transfusions, the consultants have had Samuel on an aggressive course of treatment, which consisted of being infused daily with medication to breakdown the iron on his liver.
Treatment has finely brought about the right result to get Samuel to transplant and he is due to start his pathway of care in December this year.
So here we are, to Samuel's biggest challenge yet, and trust me when I say he has had so many in his life, more than any young boy should have had to bear. Regardless Samuel is brave and smiles throughout.
By setting up this page, we are trying to generate support for Samuel and his family during the difficult times they face.
This funding will enable Samuel's parents to fully dedicate their attention to their son, whilst he has to go through this life saving treatment.
Samuel has become a superstar after appearing on an ITV programme 'Kids with Cameras' focusing on children and how they cope living with a serious illness. Both local and national media featured articles and following this coverage, lovely, kind people have already started making donations after reading Samuel's moving story.
We have completed a whole host of fundraising from Samuel since this fund was started in 2014.
Our first fundraising event consisted of a 40 mile walk from Whitby to Billingham, this was completed by a wonderful crew of people that set the ball rolling and raised a massive amount of money approximately £6000 was raised before during and after the walk! I know from experience people's feet were pained in the walk we completed on 11th October 2014! It was a very tiring day but worth every penny raised!
The second fundraiser was completed by Samuel's school, Priors Mill Primary, due to the school hosting a Super Hero day, where parents helped to dress their children in their favourite super hero outfits! A brilliant £3000 was raised from the day, Samuel is so proud to have wonderful people surrounding him in his own school!
The third venture is collecting make a wish tokens, which is ran by the Evening Gazette. Being one of the groups selected to participate, we submitted 1000's of wish tokens, which seen us take a small share of the £40000 prize money that was up for grabs!
The fourth fundraiser was organised by Lucy Gash, which took place in April 2015, at the Roker Hotel in Sunderland, where a family fun day was in full swing! The theme... Super Hero's and Party Princesses! It was a truly wonderful day and everyone was on their super fund-raising form!
However, our fundraising story has not yet come to an end...
Our very good friend Craig Murray recently approached us, to say that he would like to contribute and participate in one more fundraising effort for Samuel before he is due to start his treatment in December this year.
Craig will be doing the Great North Run (GNR) for the very first time on 10th September 2017!!!
We were all delighted with his offer and appreciate Craig wanting to run especially for Samuel, so please get behind him and show your support by sponsoring Craig to complete the half marathon (hopefully unscathed), we will be there cheering for Craig on the day, so if anyone would like to come along we could make it a fun day out together!!
We would as a family also like to mention, that any proceeds leftover following Samuel's treatment, will be donated to the Anthony Nolan Trust, as without their help and wide reach of available donors, Samuel wouldn't have the chance at the life he will soon be having.
If you haven't registered to be a donor with Anthony Nolan already, please do, as it could potentially save a life, like it will Save Our Samuels.
Please accept our heartfelt thanks for your continued support.