Libby's Legacy is a Special Named Fund at CCLG raising money for research into soft tissue sarcoma, in memory of Liberty.
Liberty was diagnosed with angiosarcoma, a type of soft tissue sarcoma. Her mum, Hannah, shares her story…
Liberty lived with me, her sister Alexis (now 17), and her brother Maximus (now 2). She left school in 2022 and started an Animal Welfare course at college that September. Maximus was born the following month, and Liberty doted on him. She had always loved animals but unfortunately didn’t enjoy the course as much as she had hoped. Towards the end of the course, around May or June, she started to feel unwell. After several trips to the doctors, she was diagnosed with an autoimmune disease called Addison’s.
She was put on medication and began to feel better, but remained too unwell to start college that September. Instead, Liberty decided to study from home and began an online A-level in English Literature. However, after spending lots of time with her brother, she applied to our local college to study childcare instead and was due to start in September 2024.
In the months leading up to Liberty becoming unwell, we were enjoying lots of time together as a family of four. Liberty wasn’t a typical teenager - she loved reading and spending time with her family most of all. Maximus adored her too. We had recently moved house, which Liberty loved, as she finally had her own room to decorate and make her own after sharing with her sister for so many years. Liberty was a homely person; she loved cooking and had a real passion for food. We loved watching films together, and she was so excited to introduce Max to her favourite Disney films. Liberty loved Disney, and her favourite film was Beauty and the Beast.
At the beginning of May 2024, Liberty started to feel more tired than usual. Tiredness was a known symptom of her Addison’s, but she also began feeling nauseous and developed a light but continuous period - symptoms that could also relate to her condition. I took her to the doctors, and she was referred to Endocrinology. The GP suspected it might be hormonal and wanted further investigation, so we had to wait for an appointment.
At the beginning of June, Liberty noticed discomfort under her left breast, which soon began to swell. The doctors initially thought it was mastitis and prescribed antibiotics. When she started being sick every morning, we went back. Another doctor prescribed a different type of antibiotic, but after five trips in total, we were finally referred to Breastcare. They believed it was an abscess and prescribed stronger antibiotics, yet her breast continued to swell.
Breastcare then decided to drain Liberty’s breast as they still believed it was an abscess. By this time, her left breast was twice the size of her right. When they drained it, it wasn’t what they were expecting as the fluid that came out was a clear blood stained liquid and was in lots of tiny pockets rather than one large pocket. This procedure seemed to aggravate the swelling further, and it grew even faster.
It was an extremely painful procedure for Liberty, who had autism and therefore disliked being touched. This made the procedure distressing for her, and she would cry and retch while it was being done. They tried to drain it another two times, and finally decided to do a biopsy in August, just in case it was cancer – which they said was highly unlikely. During this time, Liberty was still being sick in the mornings and had a continuous period. Finally our appointment with endocrinology came, and they ruled out her symptoms being from her Addison's.
Breastcare then told us they believed Liberty’s swollen breast was due to a rare hormonal imbalance that caused one breast to grow more than the other, and that it wasn’t anything serious. However, the biopsy results came back inconclusive, as the tissue was degraded from all the earlier draining. A second biopsy was carried out, and on 21st August 2024, we were told that Liberty had a rare cancer called Angiosarcoma.
A scan revealed that it had already spread to the lymph nodes in her left armpit. Liberty was due to begin treatment at a specialist sarcoma hospital nearby, but there were no available beds, so we were sent home. By this point, Liberty could no longer walk more than 10 metres due to the pain, and her breast was around ten times the size of her right. She was also being violently sick every morning.
We were told how aggressive her cancer was and that it needed to be operated on before she could recieve any other treatment, but there were still no beds.
We were told how aggressive the cancer was and that she needed surgery before any other treatment could begin, but still there were no beds. At the beginning of September, I took her to our local A&E because her health had deteriorated so much, and she was in unbearable pain. We hadn’t been given any medication to help at home, and as a mother I felt so helpless. Thankfully, we met an amazing doctor who contacted the sarcoma hospital and secured Liberty an urgent bed. She was transferred within a few hours and had surgery on 10th September.
By the time Liberty was operated on, the tumour was 10lbs. The surgeon removed Liberty’s breast and surrounding tissue down to the ribcage, as well as all the lymph nodes in her left armpit. There had been so much fluid that her skin had stretched and blistered, with fluid beginning to seep through. The surgeon also removed tissue from Liberty’s back to replace the tissue taken from her breast.
While recovering from surgery, Liberty caught hospital-acquired pneumonia. She was discharged a few weeks later, and we had to wait six weeks to find out if a clear margin had been achieved between the cancerous and healthy tissue. Unfortunately, in October we learned it hadn’t, and she would need radiotherapy. Her name was put forward to a panel to have protontherapy in Manchester.
While we waited for the protontherapy, on the 1st November, I had to take Liberty to A&E as she started vomiting and had extreme exhaustion. She was treated for an Addison’s crisis. Fluid was found on her left lung, initially thought to be from surgery or pneumonia. After a CT scan, Liberty was transferred back to the sarcoma hospital, where we were told that the cancer had spread to her left lung and was now incurable.
Liberty had a chest drain put in, and they drained 5L of fluid. She then started palliative chemotherapy a few days later. She was given two different chemo’s (Doxorubicin and Ifosamide) one after the other. Liberty came home a few days later, but was readmitted a week later with a suspected infection. In this time, she had set up a fundraiser to raise money for the Teenage Cancer Trust by shaving her head. She raised £8,000, and also donated her hair to The Little Princess Trust. Liberty was later gifted a wig from the charity, which she loved!
Liberty developed a severe chest infection and was put on oxygen and a longer course of antibiotics, delaying her next round of chemotherapy. She was moved to the respiratory ward and had another chest drain inserted. She stayed in hospital until she was well enough for her next round of treatment, which took place just before Christmas, meaning she spent Christmas in hospital.
After a scan, we finally received some good news — the cancer had shrunk. She came off oxygen, and her persistent cough had stopped. The infection had cleared, but she was struggling with severe water retention, and her sodium and potassium levels were unstable, preventing her from coming home. She also developed blood clots around her Hickman line.
Her next round of chemotherapy, scheduled for 13th January, was delayed again due to the line and a stomach infection. She eventually received her third round on 20th January but had to remain in hospital.
On 27th January, Liberty phoned me in a panic, saying the nurses hated her and were trying to hurt her. She was confused and anxious. On 3rd February, she had a seizure and was sent for an MRI to see if the cancer had spread to her brain. She drifted in and out of sleep, still very confused. That night, I was called and told to come immediately, as she had suffered another long seizure (over 5 minutes) and they didn’t think she would make it through the night.
When I arrived, doctors asked whether I wanted Liberty to be resuscitated. Thankfully, she didn’t have another seizure but remained unresponsive. The MRI came back clear, and doctors concluded she had experienced a rare reaction to Ifosfamide. She was given methylene blue to help flush it out of her system.
Liberty woke up the following night, but was extremely confused and not making any sense. Over the next few days, she didn’t recognise people and began hallucinating and having paranoid thoughts. She believed the nurses were trying to poison her and pulled her lines out. Doctors couldn’t tell us if she would recover or if it was permanent damage. On 10th February, a neurologist explained that Liberty had an infection on her brain and had suffered a psychotic episode, possibly caused by the chemotherapy or steroids.
Gradually, Liberty began to improve, and on 19th February, Maximus was finally able to visit her for the first time since 1st November. Children weren’t usually allowed on the ward, but an exception was made.
On the 7th March, Liberty was finally well enough to come home. She was on permanent oxygen now and they thought that it was too risky to have another drain put in. We were introduced to the hospice nurses, so that if and when Liberty’s health deteriorated, we had got to know them.
On 15th March, she was admitted again with a suspected infection. Although her blood cultures came back clear, she had spiked a temperature. Doctors asked whether she wanted to continue chemotherapy, knowing the risks included serious infection or more seizures, or whether she wanted to stop treatment and spend more time at home. Liberty decided to try one final round, using only Doxorubicin. She received it on 20th March and came home on the 25th.
Unfortunately, Liberty was admitted to Warwick A&E on 1st April with neutropenia and another infection. She was transferred to the sarcoma hospital and given a blood transfusion. She returned home on 5th April but was readmitted on the 13th with chest sepsis. There was so much fluid on her lung that her heart had shifted to the right side of her body. She could no longer lie on her back, as her face would turn blue, but draining was too risky. Specialists advised that the pockets of fluid on her lung were infected and untreatable.
On 2nd May, whilst Liberty is still in hospital, I noticed a swelling near the scar where Liberty’s breast was removed. A CT scan confirmed the cancer had spread again. Liberty decided to stop all cancer treatment and not be admitted for further medical intervention, including for infections or her Addison’s. She signed a ReSPECT form and came home on 3rd May for end-of-life care.
The hospice nurses predicted she had around two weeks. We bought Liberty a rabbit and spent all our time together watching her favourite films. We celebrated her birthday on 30th May - she slept for most of the day but had requested a beautiful Bridgerton themed celebration.
Liberty passed away in the early hours of 1st June, peacefully in her sleep at home.
We received hospice and district nurse care from 3rd May to 1st June. The support we had at home was incredible - both the hospice team and the district nurses were amazing.
Liberty was my firstborn. She was a happy, content baby, always smiling. As a toddler, she loved playing with her Sylvanian Families toys. She had an incredible imagination and would play for hours, making up stories and voices. She adored Disney, especially the princesses, and had a lifelong love of animals - spending hours writing animal facts and keeping them neatly in folders.
Liberty had delayed speech and was later diagnosed with autism. Things didn’t always come easily to her, but she had great inner strength and resilience. Whatever life threw at her, she faced it head-on. She was also incredibly kind. She adored her sister Lexi and would often try to mother her - always protective and caring.
Liberty showed incredible determination throughout her school years. I was often brought to tears during parents’ evenings or when reading her school reports - I was just so proud of how hard she tried in everything she did, always with a smile on her face.
Liberty was extremely strong minded, which could be quite challenging when she was growing up! It became one of the things I loved most about her. She had a very strong sense of what is right and wrong, and always stood her ground. She had an opinion on everything and wasn’t afraid to express it - she was a force to be reckoned with. That strength shone through from the moment she was diagnosed. She never asked “why”; she simply accepted it and fought, with incredible bravery.
Liberty also had a wonderfully positive outlook on life, something I always admired. No matter how hard things became, she could still see the beauty in the world. Even when she was so ill, she continued to find joy in small things, making plans and holding onto her hopes and dreams right until the end.
The only time she asked me “why”, was when she knew she was leaving hospital to come home to die. This was something I couldn’t answer, because it didn’t make sense.
Liberty was so kind, selfless, thoughtful, caring and funny. She had a very dry sense of humour and made everyone laugh. Liberty loved music, old and new. She loved nature and wanted to travel to beautiful places she had discovered. She loved reading - from old classics to new romance novels, and she especially adored love stories.
I would like to set up this fund to raise money for research into soft tissue sarcoma, which is greatly underfunded and has seen little progress in treatment for many years.
I miss looking after Liberty and being her mum. By raising money, I feel like in a way I am still caring for her. I would also like something to keep Liberty’s memory alive, but at the same time, help others that are going through what Liberty went through. Liberty’s brother will not be able to remember her much, which really upsets me. I’m hoping we can do things together as a family to raise money in Liberty’s memory. I know how happy Liberty would be to know that she will be helping others, as she was so kind.
I chose CCLG because I had seen other Special Named Funds and read their stories. I wanted to do something too, to help others and to raise money for research, because throughout Liberty’s cancer journey, there often didn’t feel like much hope - her cancer was rare, underfunded, and under-researched.
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