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 encephalopathy and was sedated to protect her brain, and put on dialysis to support her kidneys.

In ICU, Millie relied upon 12 different machines to keep her alive. During this period, Ceri underwent assessments in the hope of to 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 and asked to speak to her brother. Ceri said that the family felt euphoric; they seemed to be over the worst.

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.

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, never cut since birth. 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.

Millie's parents and 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.

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 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, Ceri 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 be 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.

When asked what inspired the family to found the charity. They 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 the family struggle with to this day. The lack of support from schools and the local authority is, to us, unforgivable. We wish to ensure all children and families are properly supported.