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 were 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 encephalopathy and 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 for her bravery and stoicism.
A time of desperation
In PICU, 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, but 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 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 the 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 Acute Hepatitis Associated Aplastic Anaemia, a rare disease and blood disorder which is 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, with medicine giving very little help.
Fighting against infection
Millie received chemotherapy, immunotherapy and a stem cell transplant in an attempt to combat the disease. 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 and dealt with the issue, 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 Nigel and Millie’s three brothers Jake, Charlie and Harry 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.
The Millie Wright Children’s Charity
As a family, the Wright's have worked together to found the Millie Wright Children’s Charity in honour of their beloved daughter and sister.
Ceri says: “We were lucky enough to receive some 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 charitable support for children and their families suffering from a life threatening non-cancerous illness. It felt discriminatory and wrong".
On the ward when Millie awaited her liver transplant, Ceri met parents with critically ill children who would die if they didn't receive a transplant. "There was limited 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: “When a child is given a life threatening diagnosis whether it is cancer or not your world is turned upside down. It can be a long journey affecting families financially, emotionally, physically with many more challenges ahead.
Our experience is no different to any other family who have a child with a life threatening diagnosis. However, we had the unusual experience of experiencing the contrast of two wards. Ward L50 receives less charitable support and does not have an an onsite family support team unlike the Oncology ward, despite all children and families facing the same challenges.
Our vision is to address the inequalities in charitable support for children in hospital with a life threatening diagnosis.
Millie's isolation and lack of support for her mental health and wellbeing 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, their friends and families are properly supported.”
The Millie Wright Children's Charity is exclusively dedicated to providing extensive hands-on support with a focus on mental health and wellbeing for families who's child has received a life threatening diagnosis or with complex medical needs.
A few words from Dr Beki James (Consultant Paediatric Haematologist)
"Every year 100 to 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 are not making enough blood cells then the person will be tired, pale, at increased risk of bruising or bleeding and at risk of 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 and 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, but 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 this 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."