On the 31st March 2021, we put our gorgeous Lollipop to bed for the last time. Sometime during the night she slipped off peacefully to be with the angels. Our hearts are broken but her big sister Daisy says she is now running and skipping with the angels in heaven, her head doesn’t hurt anymore, forever seizure-free. Here’s her story.

Lola (Lolli or Lollipop as we affectionately called her) had a very short and complicated life. She arrived in the world a tiny little bundle with a thick head of black hair. She was our second daughter and younger sister to Daisy, who was 2 ½ years old at the time. My pregnancy and birth was all perfectly straightforward and she was a lovely chilled baby. My husband Adam and I felt like the luckiest people in the world to have two lovely healthy girls.

However, within the first week Lolli started to encounter some difficulties. It started with constipation, which is uncommon in newborn breastfed babies. Then she struggled to regain her birth weight and was really slow at feeding. I remember this horrible anxious feeling in the bottom of my stomach that something wasn’t right. As a paediatric nurse, I knew she didn’t quite feel right, but at the same time there wasn’t anything alarming. At her six-week check-up the GP noted her poor head control and lack of eye contact and smiles. We went back to the GP a few times and she eventually referred Lolli to a paediatrician, as there was no improvement with these developmental milestones.

Whilst waiting for this appointment, at exactly three months old, I noticed her going blue round the lips, she felt even more floppy than usual and was unusually sleepy. I rushed her to A&E, where she had another episode in front of one of the nurses. She was admitted to hospital for observation, however didn’t have any more of these episodes, but had lots of tests (bloods, EEG and MRI), which all came back normal. They told us it was probably silent reflux and started her on treatment for this. We were sent home and told there was nothing to worry about, maybe her development was a little behind, that was all.

At home, we noticed that she started having these rapid blinking episodes. Now I was really worried. I knew this was by no means normal. I spoke to the doctors on the ward, which was also the ward I worked on as a senior staff nurse. I was told not to worry about this, maybe it was just her eyes trying to focus. I called up an old colleague, who happened to be an epilepsy nurse specialist. She was also very worried by what I told her. She put us in touch with a neurologist and we booked the first available private appointment for a few weeks’ time.

Lolli continued to have more episodes of blinking and going blue round the lips, and it felt like she would actually stop breathing for a moment. But every trip to hospital resulted in normal test results, and her ‘episodes’ were unwitnessed by the consultants on duty. They still insisted it was reflux.

At the appointment with the neurologist we were told there were no ‘red flags’ with Lolli, and advised we get her reflux medication maximised. Driving home from this appointment we should have felt relieved, however, having seen these blue episodes so many times, we just felt sick with worry. Instead of going home we thought we should immediately take her to A&E as we couldn’t ignore these episodes. We drove to our local hospital and just as we were about to take a seat in the waiting area, she had a prolonged blue episode. The consultant grabbed her out of my arms and tried to get her to come round. She was bagged to help her start breathing again and after what seemed like a lifetime her colour started to come back.

The A&E consultant was the first person we felt truly listened to us and our concerns for Lolli. He said that what he had seen was certainly not normal and definitely not just reflux. She was admitted to hospital, this time for two weeks. We sat there watching her having these episodes on and off, whilst on a monitor we could see her oxygen saturations were going down to 20% each time. Eventually, a doctor saw her hand jerking during one of these blue episodes. They decided this was likely going to be some kind of seizure and we started her first AED (anti-epileptic drug).

Whilst this was a terrifying diagnosis, we also felt some relief that we were finally being listened to and they were doing something. We were also told that you have a 70% chance in controlling seizures with the first AED. They sent us home, but I was terrified I would never sleep again. We were told we would not be provided with any monitoring or emergency medication, as it had not been needed during her stay in hospital.

We did not feel safe to do this. Lolli’s saturations had gone down to 20% with each episode, and giving oxygen seemed to help them resolve quicker. I demanded oxygen at home and after trying various apnoea monitors that didn’t work, we ordered an oxygen saturation monitor from eBay.

The next few months were hell. The first medication made no difference. Lolli contracted an ecoli UTI from hospital and was not feeding enough. She’d also had her first prolonged tonic seizure and without emergency medication to give her at home, it took the paramedics 29 minutes to stop it. We were back in hospital just one day after being discharged feeling distraught.

Her medications were increased and we were now given buccal midazolam as emergency medication. As time went on her seizures changed to various forms, the blinking now involved jerking of all her arms and legs. These would only last a few seconds but would happen continuously throughout the day. She also had longer seizures where she was unresponsive with all limbs jerking, and these would only resolve with emergency medication.

She had vacant episodes with her eyes going in different directions, and she continued to have blue episodes, which could last up to two minutes. They were all horrible to watch, but the blue episodes were the hardest to witness, and so terrifying. We were afraid to leave the house most of the time or leave her on her own for even a second. We were constantly in and out of hospital with no real diagnosis other than epilepsy.

Lolli’s development was non-existent, feeding was becoming difficult, she had a feeding tube for a short time as she wasn’t gaining weight, and it would take hours to get her to drink her milk and take her medication. At one point she was on three daily AEDs, yet the seizures were getting more frequent and more severe. Sometimes we were using emergency medication every day, or twice a day. She was constantly picking up viral infections and temperatures, which would make her seizures spiral out of control. All this time we just felt like we were in survival mode trying to keep her alive. Watching her suffer felt like a torture like no other. At the same we were trying to give our oldest daughter, Daisy, as normal life as possible.

While all of this was going on we felt very much alone. We would never hear from Lolli’s neurologist or her consultant to hear how she was responding to the medication and her six-monthly check-ups would just go through the same questions over and over again. They would repeat the same intrusive tests and we were never informed of the results. Our lives revolved around researching the internet or talking to people to find a way to help us give Lolli some quality of life.

During one of our darkest times, my sister spoke to one of her clients who told her about the Daisy Garland charity. I looked them up online and read Sara’s story. I instantly felt a connection to what this family had been through.

Sara‘s daughter Daisy had had a great response to the ketogenic diet. I’d always asked Lolli’s doctors about the ketogenic diet but been shut down saying there was a long waiting list, or it would be hard work. I spoke with Sara, who was a wealth of information and support. She was the first person I spoke to who I felt completely understood what we were going through. With her support we felt more empowered to push for the ketogenic diet hoping it would be the miracle we were hoping for.

We struggled to believe that even though Lolli was entitled to try the diet - as she had failed two AED’s and we were in and out of hospital with no control over her seizures - we would still have to go on a waiting list to get her on the ketogenic diet. We managed to get her on a clinical trial at St George’s Hospital, which was comparing a third medication with the diet.

A random computer algorithm then decided that Lolli was to try the third drug, and if this didn’t work we could try the diet in eight weeks. We were distraught, after watching our daughter suffer for months being told she had to try another medication when the last three had done nothing but make things worse. She was now being fed through a tube all the time, and other than a few smiles here and there, she wasn’t developing.

At 11 months old Lolli couldn’t sit up, hold her head up, make eye contact, laugh or hold anything. She was struggling with food and sometimes managed just a few spoons of puree. We were told she was visually impaired, and it was likely that if we ever found a treatment to control her seizures, it was unlikely her development would improve. There was still no diagnosis.

It felt like we were living in a nightmare. We came home from hospital and tried the new medication as we were told. But we were still in and out of hospital with Lolli suffering relentless seizures. I didn’t know how much more of this she could take, we feared we would never get to even try the ketogenic diet.

I called St George’s Hospital in tears five weeks into the trial and begged them to put her on the diet immediately. I told them if she didn’t survive to try it, it would be their fault. They finally agreed we could be admitted to hospital and started on the ketogenic diet. She was tube fed at the time, so getting started on the diet was fairly easy.

She had ketocal milk and a small amount of purée meals, which she seemed to enjoy. We immediately saw a drastic reduction in the number of seizures she was having. We could actually count them, which was something we hadn’t been able to do before. She seemed more content and we saw very small progress in her development. She started rolling around on the floor and lifting her head up. We could get her to giggle with lots of tickling.

We managed to finally get rid of her feeding tube, she enjoyed the ketocal milk and the puree meals made out of mascapone or Greek yoghurt. We managed to wean down the other medication and were barely having to use her emergency medication. We only had one further emergency admission to hospital after the diet, which was after her immunisations as she got a fever.

We felt like we had found her miracle and were starting to see our friends again, after being house-bound and hospital-bound for so long. Unfortunately, the effect did not last and after 6-8 weeks the seizures started to creep back. However, for the most part they felt more manageable and we found a way to manage them at home, without going in and out of hospital. This gave Lolli, her sister and us a more ‘normal’ life.

Despite her frequent struggles, we saw Lolli develop her own little unique personality. She couldn’t talk or walk, yet she found her own way to get around. She knew exactly what she wanted and how to get it. She loved being cuddled and walked around while being held, she liked walks in her pushchair and bath time was her favourite time of the day. She loved going to bed at night swaddled up tight in her favourite blanket. We took her places we never thought we would get to take her.

It was an extremely tough life and we were always treading on egg shells, but she still had a life that was worth living and she taught us what the important things in life are. We stayed on the ketogenic diet for about 18 months. We tried many other medications, and eventually we went private and found a new neurologist at King’s College Hospital who really cared about Lola and tried to help her.

In the six weeks before Lolli passed, she went into hospital and had lots of tests and was started on a course of steroids. We never saw her have another seizure after that and find great comfort in knowing that the last few weeks of her life were seizure-free, and she was at home surrounded by everyone who loved her.

Over the Easter break I gave birth to a baby boy – Alfie - and when he was five days old, Lolli decided she’d had enough of the fight and drifted off in her sleep, at a time we would have least expected it. We didn’t have her on a monitor that night, we didn’t really use her monitor after the first year as the blue episodes stopped and sleep was her only respite from her seizures.

Knowing that if she’d had a monitor on that night then she might still be here is going to be very hard for us to live with.

We found that as parents of a child with epilepsy we were never told to monitor her or be guided with this. We made our own decision depending on how Lolli was doing. We usually slept next to her when we thought she was going to have a bad night and we had a camera next to her bed so we could always check in on her at night.

When we brought Lolli home after the epilepsy diagnosis, our epilepsy nurse did not tell us about the Daisy Garland charity or that we could potentially get a monitor funded for her.

We want to share Lolli’s story to raise awareness for the wonderful charities that have supported us during and after her short life with us. The Daisy Garland charity does such amazing work providing families of children with epilepsy night time monitors so parents can sleep at night knowing they will be alerted if their child has a seizure.

No parent should ever have to go to bed wondering if their child will still be alive the next morning. Daisy Garland also funds specialist ketogenic dieticians, a treatment which can transform the lives of children with epilepsy. Although the keto diet was not the miracle we hoped for with Lolli, we feel that it was a turning point in her care, and it gave a her a much needed rest from the relentless seizures for a few weeks.

A lot of parents of children with severe forms of epilepsy eventually have to accept that they might never find a treatment that completely controls their child’s seizures, but it sure does help to know as parents that you have tried everything possible to help them.

We will be forever grateful to Sara and the Daisy Garland charity for being there for us when we felt so lonely and isolated. I hope Lolli’s story may help raise awareness for the struggles of families like ours and help to raise funds for the amazing work the Daisy Garland charity does.