A NORTH East family has been devastated by the news that their one-year-old has been diagnosed with the rare condition aplastic anaemia.
Only one in every million people suffer from the condition, which means the bone marrow and stem cells do not produce enough blood cells and is fatal if untreated.
Max Gardner was diagnosed with the condition after his parents were alarmed by significant bruising and rashes all over his body.
His parents, Connor and Rachel, who live in Hebburn, took him to South Shields Hospital, where he was incorrectly diagnosed with immune thrombocytopenic purpura, a condition which a child will grow out of.
However, as Max’s condition worsened, he ended up at the RVI in Newcastle, where doctors conducted tests which showed he had the much rarer aplastic anaemia.
“He looked like he was a child abuse victim; we were really worried about what people would think, as he was covered in bruises,” said dad Connor.
“We took him to the RVI for further tests, and they realised that maybe the condition was worse. Initially, we thought he would be diagnosed with leukaemia, but the consultant told us that it was aplastic anaemia after a bone marrow biopsy, which was administered under anaesthetic.
“They told us about the condition, and that the outcome could lead to death if Max was to catch any type of sickness bug, as his immune system was non-existent.
“We got our emotions out after we got the diagnosis – we had a cry – but we knew that we needed to be there for Max and help him get better.”
The only way to cure aplastic anaemia fully is with a bone marrow transplant, and both Connor and Rachel were tested to see if they were matches.
Fortunately, Rachel was a near-perfect match, a very rare scenario.
Connor said: “Usually they would use siblings for the transplant but Max does not have any. There is about a 25% chance that me or Rachel would be a match, and then there is about a 1% chance that it would be a 9/10 match.
“The condition that Max has affects one-in-a-million people, so it is very unfortunate for Max to have had this condition, but it is lucky that his mother has been a near-perfect match.
“Chemotherapy is the next stage before you have the transplant, but that can lead to wiping out fertility, so we agreed to a new trial that would give Max the best chance of being able to have children of his own when he grows up.
“They take a biopsy of one of his testicles and they store it for future; it is the best chance he has of having a child when he is older if he is infertile.”
The family now have to shield for two weeks, before Max and his mother head back to hospital and onto the transplant ward, where he will spend the next two months.
Fortunately, Rachel can stay with Max during this time, but Connor can only see his son at specific visiting hours and has to isolate, so that the risk of spreading any illness is at a minimum.
He said: “Max starts his chemotherapy on December 10, which takes place over five days, and during that time Rachel will be getting treatment so that the hospital can help harvest her bone marrow.
“Then, when she goes to give the transplant, she will be there for four hours while the machine separates the bone marrow before it is given to Max.
“Then he gets a bone marrow transplant, which is very similar to a normal blood transfusion.
Connor and his partner have set up a GoFundMe page, to help pay for the added costs of not working and to help them support them through this tough time.
He said: “We have been overwhelmed with the support that people have given us and the GoFundMe page has been a great way for people to give us time.
“I have been taken back by the generosity of total strangers.”
Connor stressed the importance of raising awareness for bone marrow transplants, and had his fiancée not been a very rare match, they would likely have had to wait for a match on the donor register.
“I think it is important to raise awareness of the Anthony Nolan page. We have been lucky enough to get a donor for Max through his mam, but there are lots of people out there who have not been so lucky and are waiting for a donor
“We have met a little girl who is eight years old and she hasn’t got a match yet, so we are just hoping that people will join the donor list as it may save someone’s life.”