Aplastic Anaemia Awareness Day: Millie’s story
March 4th marks Aplastic Anaemia Awareness Day. Aplastic anaemia is a rare disease whereby a person’s bone marrow does not produce enough new blood cells, causing tiredness, shortness of breath, headaches, fevers, bruising and rapid heart rates.
Following on from Rare Disease Day earlier this week, we are supporting Ceri Wright and her family who, tragically, lost their 13-year-old daughter and sibling Millie Wright to aplastic anaemia last August.
Here’s Millie’s story…
The start of Millie’s symptoms
In March 2021, Millie Wright of Poppleton, York, complained to her mother about joint pain, stomach ache, itchy skin and headaches. Concerned, Ceri called 111 and the GP but, due to Covid-19 restrictions, neither was able to offer Millie a face-to-face consultation.
Towards the end of March, Millie received a face-to-face appointment with a GP, who ruled that there was nothing severely wrong with her observations. However, Ceri insisted that Millie have blood tests as she strongly felt that something was very wrong with Millie.
The following day, after receiving her test results, Millie was admitted to hospital with deranged liver function. Ceri remembers that with every passing day Millie’s skin became more and more yellow. Almost a month later, Millie received a diagnosis of acute liver failure. She then began to suffer from encephalitis. She was sedated to protect her brain, and put on dialysis to support her kidneys.
As things worsened for Millie, Ceri and her family felt distraught, but also proud of her bravery and stoicism.
A time of desperation
In ICU, Millie relied upon 12 different machines to keep her alive. During this period, Ceri underwent assessments in the hope of becoming a living donor for Millie; she wanted to do anything she could to help her.
Soon after, Millie received a liver transplant from a deceased donor. Despite the good news, there was still much concern due to the risk of Millie having to be woken from her coma slowly and carefully to protect her brain.
Millie came round and immediately and asked to speak to her brother. Ceri said that the family felt ‘euphoric’; they seemed to be over the worst.
Diagnosis of aplastic anaemia
Shortly after Millie’s transplant, the family received news that Millie was no longer making platelets, had low neutrophils and red blood cells. The doctors advised the family to prepare for the likelihood that Millie would require a stem cell transplant.
Eventually, this led to the diagnosis of hepatic aplastic anaemia, a rare disease and blood disorder thought to impact one in a million people. Devastatingly, Millie was that one. This diagnosis explained why Millie was no longer producing platelets and red blood cells.
Ceri said: “Watching your child deteriorate before your eyes is worse than heart breaking. I felt broken and completely helpless; I had no control. Especially after the liver transplant, I will never forget Millie’s resilience in facing everything that was thrown at her. The constant needles, blood draws, NG tubes, biopsies and medications were relentless. This was the reality of aplastic anaemia”.
Aplastic anaemia is incredibly hard to treat. It strips the immune system and leaves its victims open to infection. Not long after Millie’s diagnosis, she picked up aspergillus, a difficult to treat infection, but had no neutrophils to fight it off; medicine giving very little help.
Fighting against infection
Millie received chemotherapy, immunotherapy and a stem cell transplant in an attempt to combat the infection. As the effects of the chemotherapy and the symptoms of the disease took over her already fragile body, Millie became weaker.
Throughout it all, Millie’s bravery remained unwavering. Ceri said; ‘I will never forget the day my amazing strong girl took the clippers and shaved off her luscious blonde locks. Her hair was so beautiful, always a talking point and a beautiful feature. She took control like she did all the way through her illness. She dealt with the issue, already moving on to the next’.
Tragically, Millie passed away 11 days after her stem cell transplant due to complications from the aspergillus infection.
Ceri, her husband and Millie’s three brothers were utterly heart broken. No child should ever have to go through what Millie did. Equally, no mother, father or sibling should have to experience it, either.
Despite the unimaginable devastation, the family remained extremely proud of the dignity and grace Millie had shown throughout her fight against liver infection, aplastic anaemia and aspergillus.
A voice for Millie
Millie’s family came forward to share their story because they wish for Millie’s voice to be heard. They hope for her resilience and bravery against aplastic anaemia to be recognised.
We’re helping Ceri to share Millie’s story because today is Aplastic Anaemia Awareness Day. Ceri aims to not only raise awareness of this rare disease, but equally to encourage educators and healthcare professionals to better listen to parents; parents know their children best and by instinct. Ceri also aspires to close the gap between children diagnosed with cancer and those diagnosed with a non-malignant life threatening illness.
Here at Pryers, we feel so inspired by Millie’s bravery in the face of her illness, as well as Ceri’s battle to ensure that Millie’s story is heard and acknowledged.
But what is aplastic anaemia?
Dr Beki James, Millie’s treating haematologist at the Leeds Children’s Hospital, says:
“Every year 100-150 people are diagnosed with aplastic anaemia in the UK. The diagnosis may initially sound fairly unremarkable; many families are relieved at first that it is not leukaemia, most people will not have come across it while others recognise the word anaemia and assume a course of iron therapy is all that is needed. The reality is starkly different. Although many get better, every year children in the UK die from aplastic anaemia or from the complications of treatment.
In aplastic anaemia, the special cells inside the bone marrow do not work properly. Normally, these special cells make all the different blood cells and send them out into the blood. If they aren’t making enough blood cells then the person will be tired, pale, at increased risk of bruising or bleeding, as well as infections. There will be lots of investigations to try to work out what has caused it. While these are going on we need to support the person. For example, with red blood cell or platelet transfusions or with antibiotics; they are likely to spend time in hospital. There are different possible treatments but, for many, if there is a “match”, a stem cell transplant offers the best chance of a healthy future. However, it is a high risk procedure.
I first met Millie on 10th May 2021. Millie was an extraordinary young person. We fully support Millie’s family in the creation of Millie’s charity which aims to support all children with life-threatening diagnoses as they face unimaginable challenges, to walk alongside their families and to advocate for them.”
The Millie Wright Children’s Charity
As a family, the Wrights have worked together to found a charity in honour of their beloved daughter and sister.
Ceri says: “We were lucky enough to receive fantastic support from a Leeds-based cancer charity later on in Millie’s illness. However, prior to this when Millie received treatment for her liver failure, it became alarmingly clear that there is a huge gap in support for children and their families suffering from non-malignant illness. It felt discriminatory and wrong.
On the ward when Millie awaited her liver transplant, I met parents with critically ill children who would die if they didn’t receive a transplant. There was no charity support available for these families; this to me seemed so unfair and incomprehensible.”
Ceri met two mothers who both lost their children during this time. Sadly, these women received no bereavement support following the deaths of their children. Ceri feels determined to change this as Millie would have wanted everybody to receive equal treatment; “she was such a thoughtful and inclusive girl.”
We asked Ceri what inspired her and her family to found the charity.
She said: “To close the gap and offer the same support for those children with life threatening, non-malignant haematological, liver and renal diseases, as those children and families with a cancer diagnosis.
Millie’s isolation is something I struggle with to this day. The lack of support from schools and the local authority is, to me, unforgivable. We wish to ensure all children and families are properly supported.”
The charity is still in the early stages of development and does not yet have a web page. However, if you wish to show your support, you can contact Ceri at email@example.com or visit @Millieschildrenscharity
“I’m just a kid” …
The below video was put together by Millie just the day before she tragically passed away.