The parents of a baby boy diagnosed with a rare bone marrow disorder, severe aplastic anaemia, a week before his first birthday are urging people to join the Anthony Nolan stem cell register to help those looking for their lifesaving match.
Ronnie’s parents have been told that he needs a stem cell transplant to cure the disease and offer the best chance of long-term survival.
Ronnie’s mum Laura started to notice that Ronnie was bruising a lot, which she put down to him becoming more mobile. “He had only just started crawling, then three days later when I got him up, he had blood coming from his nose, blisters in his mouth, and red dots on his body.” Laura said.
The family rushed baby Ronnie to Arrowe Park Hospital where doctors mentioned numerous potential conditions including leukaemia.
“Nothing prepares you for the words, we suspect this may be leukaemia…The room went quiet, our hearts were pounding, and then instantly our minds were jumping to the worst-case scenario and thinking how is my 11-month-old meant to battle such a deadly disease at such a young age,” Laura said.
Ronnie underwent numerous test which showed his platelets, neutrophils and haemoglobins were dangerously low. He was then blue lighted to Alder Hey Children’s hospital and placed on the oncology ward, were he received blood and platelet transfusions.
“This is a day that will forever be engraved in our minds, every time we hear sirens now it takes us back to that night of being blue lighted to Alder Hey,” Laura explained.
The family were initially relieved when further tests revealed that Ronnie did not have leukaemia. But the doctors struggled to conduct their tests as his bone marrow was so sparse, the family were told his bone marrow was at 5% with very few cells, when a baby his age should be at 100%.
Eventually, a second bone marrow test revealed a diagnosis of severe aplastic anaemia with doctors telling the family that due to Ronnie’s age a stem cell transplant, also known as a bone marrow transplant, is the only treatment to cure the disease.
Aplastic anaemia is a rare and life-threatening bone marrow disorder where the bone marrow fails to produce enough red blood cells, white blood cells and platelets. In the UK only 100 to 150 people a year are diagnosed with aplastic anaemia and it is usually seen in children over five years old.
“This is all brand new to us, we’re so worried about infections as he has also been diagnosed with being neutropenic and have been reading stories online,” said Laura.
“Now we have a diagnosis we have to do something to help. There are so many other kids out there who need a match, we are putting it out there for Ronnie and to educate people about the lifesaving potential of stem cell transplants.”
Despite having infusions twice a week and injections to stimulate bone marrow production, Laura said Ronnie is “still smiling and happy.”
Ronnie’s family is working with stem cell transplant charity Anthony Nolan on the campaign Register4Ronnie to encourage people from all backgrounds to sign up.
“We couldn’t forgive ourselves if we didn’t do something. We want to help everyone waiting for a match. Being on the ward at Alder Hey and seeing all the babies, children and teenagers battling Leukaemia who may potentially also need a bone marrow transplant has really opened our eyes,” Laura said,
“Being from Merseyside, we all stick together from here,” Laura added.
“We’re sharing Ronnie’s story because we want people to get tested, if a match comes up for him then great, but a match for someone else, that’s amazing as well.”
“Our aim is to raise awareness of aplastic anaemia; no one’s heard of it. And we want to raise awareness of the stem cell register too; how easy it is to join and how simple it is to donate your stem cells and save a life.” Laura said.
Rowena Bentley, Head of Programme and Community Recruitment at Anthony Nolan, said: “It’s heartbreaking that baby Ronnie and his family are going through this, and we are doing our best to support them.
‘At Anthony Nolan we give hope to families affected by blood cancers and disorders, but we can’t do it without the lifesavers that sign up to our register.
‘If you are aged 16-30, please sign up to the Anthony Nolan register online and send back your swabs. You could be the match that someone like baby Ronnie needs to survive.”
To find about more head to: INSERT LINK
People who are unable to join the Anthony Nolan register, or are aged 31 and over, can support the charity’s work financially. It costs Anthony Nolan £40 to add each new potential lifesaver to the register which covers recruiting a donor, collecting their sample, and analysing it to find out their tissue type.
ENDS
For more information, and to enquire about media interviews, please contact the Anthony Nolan press office using press@anthonynolan.org or 020 7424 1300.
Out of hours, contact the duty press officer on 07881 265 285.
NOTES TO EDITORS
Please note: Anthony Nolan changed its name in 2011 and is no longer known as Anthony Nolan Trust.
Neutropenic describes a condition, typically caused by chemotherapy or bone marrow issues, where a person has an abnormally low level of neutrophils, a type of white blood cell crucial for fighting bacteria.
About Anthony Nolan
Anthony Nolan is a UK stem cell transplant charity with 50 years of expertise in uniting science and people to push the boundaries of what can be achieved for blood cancer and blood disorder patients.
Its world-leading stem cell register matches potential donors to patients in need of transplants. It carries out cell and gene therapy research to increase transplant success and supports patients through their transplant journeys.
Anthony Nolan helps four people in need of a transplant a day, giving more people a second chance at life. But the charity won’t stop until all patients have access to the treatment they need, so many more survive.
Stem cells hold enormous potential and have the power to help people with blood cancers and blood disorders. This potential inspires everything Anthony Nolan does. Driven by patients, backed by stem cell donors, and powered by science, the charity won’t stop until the lifesaving potential of the cells inside us all has been uncovered.
Join Anthony Nolan’s register or support its research. Together, with your help, Anthony Nolan can unlock the answers inside us anthonynolan.org
What is a stem cell transplant?
If a patient has a condition that affects their bone marrow or blood, then a stem cell transplant may be their best chance of survival. Doctors will give new, healthy stem cells to the patient via their bloodstream, where they begin to grow and create healthy red blood cells, white blood cells and platelets.
Key statistics
- Since it was founded by Shirley Nolan in 1974, Anthony Nolan has facilitated over 28,400 transplants for people around the world.
- The charity facilitates around 1,200 stem cell transplants from an unrelated donor every year for patients in the UK and more than 300 for patients abroad. For many, a transplant is their last chance of survival.
- Around 90% of donors donate through PBSC (peripheral blood stem cell collection). This is a simple, outpatient procedure. Donors are supported throughout the process by the Anthony Nolan team.
- Currently 15% of the UK Anthony Nolan stem cell register is made up of young men, but they account for more than half of people called upon to donate.
- There is a pressing need to recruit more people from diverse backgrounds to the Anthony Nolan register, to help more patients from minority ethnic backgrounds find the lifesaving matches they need.
- Blood cancer is the fifth most common type of cancer in the UK and the third biggest cancer killer. It accounts for 9% of all new cases of cancer diagnosed in the UK.
- Sickle cell disease (SCD) is a group of inherited blood disorders that affect the red blood cells in your body.
- It mostly affects people from African and Caribbean backgrounds and can be diagnosed soon after birth.
- People with SCD produce red blood cells in the shape of a ‘sickle’. These unhealthy cells stick together and get stuck in blood vessels, blocking the flow of healthy blood cells, which can cause various health complications and acute pain episodes
- To join the Anthony Nolan register, you must be 16-30. Anthony Nolan’s world-leading Research Institute has shown younger donors offer better survival rates for patients.