Hello, I'm Lauren Lilly's mam and I just wanted to share her story

Lilly was born on the 12th of June 2019, she was an absolute bundle of joy and her first night home she spent on her dads lap while he left me to rest. He will always remember being able to watch her peacefully sleep until she wanted to be fed. The rest of her growing up was pretty normal and aside from growing up during lockdowns she was a happy and beautiful child.

In 2024 the year started as all other Lilly was in reception with all her classmates she was enjoying being able to play with her friends and going to nannas house after school while I was at work, as the year progressed Lilly was coming down with sickness after sickness and no matter how much we tired she was just constantly sick. In May we started the trips as whenever Lilly was coughing she would set herself off and make herself more sick than just a cold would. We got told this was normal and she would develop an immune system. In June Lilly was growing even more pale and didn't really want to go outside. This continued through July and Lilly would stop playing on her banana slide and didn't want to do anything strenuous. As the new school year started in September Lilly really struggled going back to school not enjoying year 1 at all. The family team and her teachers were quite concerned as this was very unlike Lilly, normally she was the most chilled & sassy child, who had a bubbly personality and could make anyone laugh. This change in her was put down to her now being able to use the big yard and even it was thought she could possibly be autistic due to some of her new quirks and not enjoying busy places. During September and October Lilly was again getting every virus that she could have possibly picked up and was starting to fall asleep after school. She was just so tired all the time, I even had to carry her into school from the car as she was complaining of her legs being so sore she couldn't walk on them. Again the Doctors put all this down to a virus or she was just getting over the last virus. At the beginning of October she had an appointment with the dietitian in case her eating habits had anything to do with her catching the viruses and whilst she was seeing the dietician she fell asleep on her nannas lap which wasn’t right for a 5yr old. And with her being so pale she also had another visit to our GP where we seen a paramedic on duty for emergency appointments and was told that she was “medically well”, and as we all put our faith in the medical profession, and we just knew something wasn’t right as they wouldn’t even take bloods to test for anything as the Dr’s told us it would be too stressful for her !!!.

November was going exactly how October was and Lilly was still pale, no energy, and sore but listening to the doctors meant that she was just having to push a little to get over whatever virus this was. But on the 11th of november I received a call from her school as Lilly was extremely distraught and wasn’t well. They asked if I wanted them to write a letter to help back me and her dad up so we could take her to A & E and hopefully be listened to, and we agreed we needed answers and we felt like we weren’t being listened to by our own medical professionals. When we arrived at the school Lilly asked me if we were going home and I said to her that we needed to go to hospital to try and find out why she's been so unwell all the time. We got seen very quickly they took bloods from Lilly which any parent who's had their child have bloods done knows it is awful to experience. Lilly was given a bed in a bay and watched the TV while we waited on the results.

A couple of hours went by and we were asked if me and Lilly's dad could go and talk with the doctor and the nurse would watch Lilly while we had a chat. We were a little reluctant to leave her but after reassurance from the nurse we agreed. This is when we were told that they found Leukemia blast cells in her blood, and from that point on our whole world was turned upside down. I remember breaking down and feeling like I was having an out of body experience like I'd just been thrown to the wolves with nothing to hold onto. Once they had called and got Lilly's nanna, grandad and auntie down and told them and we had all had a chance to calm down we were told that we were going to be transferred to the RVI and our Lilly was brought into the room we were in and I just looked at my perfect angel and cried, how could this world be that cruel to my beautiful little girl, she didn't have bad bone in her body yet she had developed leukemia. The transfer up to the RVI was quick and once we were there we got settled into her hospital room, and Lilly received a blood transplant as her red blood cell count was down to 23 it should've been 120, this hospital room is where we would call home for the next 11 days.

Those 11 days were an absolute whirlwind Lilly would need to go into theatre to have a portacath inserted so that she could have her chemotherapy. She would need bone marrow biopsies sent off to find out which leukemia she has and would need to have a spinal tap done to see if any leukemia cells could be found there. Before lilly could have surgery she needed a platelet transfusion which she had a reaction to so she got given medicine so she could continue the transfusion and so my brave little girl went for her first magic sleep she enjoyed being able to pick a smell for her mask and then listened to the anesthesiologist recite hairy maclary from memory.

After a few distressing hours waiting for her to go into recovery we were able to go pick her up and understandably she was sore but she did amazingly she was a fighter, and then we had to wait to find out if she had A.M.L or A.L.L. During those 11 days we found out she had ALL ( acute lymphoblastic leukemia) which is completely curable.

Most of those days were spent spoiling Lilly. She was getting lots of gifts from family and friends. Lilly was especially enjoying beating her grandad at animal dominos, and getting to see what new surprises nanna and auntie had for her. Me and her dad were learning all we could about A.L.L so we could know what was to be expected and how our lives would be shaped. Lilly took everything in her stride adapting to hospital life like it was nothing.

Lilly had now started all her chemotherapies and had a list of medications as long as my arm but aside from some of them tasting awful Lilly didn't fight or put up much of a fuss as she could earn stickers whenever she took her medicine.

While in the hospital Lilly had a couple more magic sleeps, she also had MRI’s, CT scans and x-rays and always came back with a smile on her face and more stickers. We were on the right path and could go home and start doing outpatient appointments so we went home. Lilly was enjoying being at home but we could see that she was tired from chemo and she was starting to loose her hair it was coming out slowly but lilly knew that was going to happen as we wanted nothing to be a massive shock to her we just explained it by saying her naughty blood was causing it and that's why she was getting the medicine now.

We attended a outpatient appoint where lilly went for a magic sleep and she was overjoyed after as she was allowed her pack lunch, and we went home by the Wednesday I'd noticed a bruise and had told the ward over the phone but lilly was fine in herself no temperature so they were happy to review it the next time we went in which was the Thursday and it wasn't checked so me and her dad thought it was fine by the next Monday lilly was struggling badly with the bruise, by now it's the 2nd of December 2024. We were admitted again to the oncology ward. Lilly was not coping as well this time she was very short tempered and wanted to be left alone this was put down to one of her medicines side effects. By Friday lilly was reclusive and wasn't very talkative but the nurses and doctors assured us it was just the medicine and she was alright. On the night time Lilly had a seizure and she didn't speak again. Lilly did try but she was very stuttered and couldn't string her sentences together but she tried her hardest. On Saturday Lilly went for a CT scan and she also presented a new symptom which was palilalia ( which is the involuntary repetition of words or phrases). Sunday lilly did seem to perk up a bit and was allowed to eat smooth, easily swallowed food.

However Monday again our world turned upside down and Lilly went downhill they reviewed the ct scan and found that she had an infection in her brain and that's what was causing the seizures but the nurses and doctors couldn't get Lilly to respond so she was taken to the PICU, the doctors called in our family to tell them what was happening and we were told Lilly may not survive being put onto the ventilator. We had to wait and see if our little girl was willing to keep fighting.

Fight she did however she was still having uncontrolled seizures but she was in the best place. The rest of that week is a blur of meetings sitting with our baby girl praying that she would respond to the medicine and come out of it okay. On friday the 13th of December, we had a meeting where we were told that no measures would be taken to save her life if her body failed her. On Saturday Lilly's lactate levels increased which could cause her to have a heart attack so our family was called in case the worst was to happen. After a distressing day Lilly managed to over half the lactate she was producing it was still higher but it looked like we could be out the woods for now. Sunday we were told that she surprised the staff and they were expecting her to still be here. So we continued with staying with her and she was enjoying being told stories from her everyone who visited. Life in PICU is very dynamic and strange you can't stay with your child overnight and have to leave for the staff change overs but all the nurses are very welcoming and encouraging. They help you adapt and help support you being able to do your job as a parent.

On the 17th of December we were told that Lilly's liver and kidneys were struggling and we're given the option of putting her on dialysis which was a no brainer. Without it she wouldn't be able to try and continue to fight as her liver and kidneys would fail. So we had a week of dialysis.

We had Christmas day in the picu which the staff tried to make special even with the roller coaster of emotions which we were experiencing. By new years eve nothing had really changed and we had another meeting, one of her scans while in the picu had shown the Infection in her brain was spreading.

I can't put into words the feeling of being told that there's no options left and that you need to take your child (who you've cared for love with all your soul, who you'd make a deal with the devil to save) off life support. I would never wish that feeling onto my worst enemy. I begged for time just to be a mam with no extra prodding and poking no more taking her for new tests just so me, her dad and all her family could see her and try to ease the worst thing that could ever happen to a family.

On the 3rd of January 2025, we said ‘see you later’ to our little princess. We won't ever say goodbye because we will see her again. Then we got to give her a send off fit for a princess on the 17th of January surrounded by her family, teachers, parents of her friends and adults who had seen her grow up.

I am hoping to raise awareness of the infection Lilly caught which is scientifically known as aspergillus fumigatus which is an extremely common fungus which is found everywhere but it only affects people who are immunocompromised. For this common fungus not a lot is known about it and how detrimental it can be.

The first £500 we raise is going to go to the fungal infection trust and any additional raised will go to the sick childrens trust. If by any means we manage over £1,000 I will split it equally between the two.

As a family there has already been over £3,250 raised for young lives vs cancer and an additional £300+ raised for team Evie.