Parents of Swaffham boy who has battled rare blood disorder for seven years prepare for transplant
For the past seven years teenager Archie Ramshaw has been battling an extremely rare blood disorder which has seen him have more than 150 blood transfusions. Reporter Rebecca Murphy spoke to his family as they prepare for the next stage of his journey.
In October 2010, the life of Archie Ramshaw changed forever.
Then aged just seven, Archie was diagnosed with a rare form of anaemia known as Congenital Sideroblastic Anaemia.
The condition means Archie’s bone marrow is unable to produce healthy blood cells. Sideroblastic Anaemia stops Archie’s body transferring the iron in his blood into haemoglobin, which red cells need to transport oxygen efficiently.
Now aged 14, the teenager, who lives in Swaffham with his older brother Harry and mother and father Theresa and Craig, has had more than 150 blood transfusions and takes 11 tablets a day.
The transfusions have resulted in him contracting several blood and bone marrow viruses and he has had to have his spleen removed.
The teenager is now starting to build up a resistance to the transfusions and they have left his organs riddled with iron. He has to have a needle inserted into his stomach for 10 hours a day to remove the excess iron from his body.
Mrs Ramshaw said the only way forward for Archie is a bone marrow transplant, which will replace the damaged blood cells with healthy ones.
She said: “There is no other option. If we carried on the way we are he would not make it to his adult years. It could be really good or it could not be good and something we don’t want to think about. If it does not work and Archie is still here, we don’t know what is next.”
Mr Ramshaw added: “There are big risks with the surgery. The whole bone marrow transplant is another journey. Hopefully when we come out of the other side of this we can focus on where he wants to be.”
Archie’s transplant is set to take place at St Mary’s Hospital in London this year.
He will spend part of that time in isolation and could be in hospital for a number of months. Recovery could take up to a year.
Mr Ramshaw, an IT project manager, said the transplant will be “ugly”.
“He will end up with sores in his mouth and he will lose his hair,” he said. “The side effects from having this aggressive chemotherapy will be awful. And there will be the added complication of the liver fibrosis which will make it even more risky.”
The couple said Archie is starting to get “fed up” with trying to manage the illness along with the pain, side effects and school.
“Up until a few weeks ago he was happy and smiley but he is just fed up,” said Mrs Ramshaw, who is a community healthcare assistant and is also studying for a nursing degree.
“He sees all his hospital friends coming into hospital and going out. You also see the other people who come in for a transplant and don’t come out. Archie has witnessed all of this so he must be terrified.”
The couple said they hope after the transplant that the Nicholas Hamond Academy pupil can carry on as a “relatively normal teenager” and get back to enjoying football and going out with his friends.
“We hope that once he has had the transplant he will not have to have blood transfusions. We are hoping that he will not have to have the needle into his stomach for 10 hours every night,” said Mr Ramshaw.
“We are hoping he will not have to take the copious amounts of medication on a daily basis just to manage the side effects of the treatment he is having to manage the illness that he has got.”
The family have worked out it will cost around £8,000 to fund travelling, parking, hotels and food over a six month period while Archie is in hospital.
To help towards the expenses the family have started a fundraising page and so far nearly £5,000 has been raised.
Mr Ramshaw said: “My primary focus is to ensure that we fund as much as possible for all the additional costs throughout the transplant so that we can spend time with Archie, by his bed, where he needs us, without having to worry and stress about finances.”
Mrs Ramshaw added: “The support we have had has just been fantastic. I cannot believe how big it has got. My main aim was to bring awareness and if we got donations then that would be amazing.”