In January 2019 Olly had his first absense seizure. He was 3 and a half so at the time it felt worrying to think why is this happening but we thought there would be a simple explanation and would be sorted quickly. Our GP referred us to our local hospital, the Medway Maritime in Gillingham, Kent, and over the next 6 months Olly underwent EEG’s and an MRI. In May 2019 Olly had his first focal seizure and over the next 3 months these became more regularly and stronger and by the middle of August he was having 5 seizures a day on average. We was increasingly worried and still had no diagnosis, when we saw the consultant in August we was referred to The Evelina Children’s hospital in London. Olly started reception at the beginning of September and on his third day at school we had the appointment at Evelina, by this point Olly was struggling to walk as his seizures caused a weakness to his right foot and leg. We met Dr Tang, our consultant neurologist, who was amazing, she listened and saw that Olly was very sick and she diagnosed that he had a form of Epilepsy and she started him on an anti-epilepsy medication and promised to review his MRI the following week, we left feeling hopeful and relieved that someone had finally told us what was happening. The following day Olly had a big seizure at school, hitting his head as he fell, I was torn about letting him go to school, he needed to be watched constantly as the seizures could happen at any time. That afternoon Dr Tang rang me as she was worried about Olly, after telling her the events of that day she told us to go straight to Medway Maritime hospital and she phoned them to tell them Olly was to be admitted on to the Dolphin ward and to stay there until a bed became available on the neurological ward at the Evelina and she arranged for another emergency MRI to be completed the next day. Over the weekend Olly was having 70 seizures a day and the following week his MRI images were reviewed and we was told that Olly had focal cortica dysphasia, an area of the brain with abnormal brain cells that hadn’t formed properly during pregnancy and that it was often drug resistant and we was moved to the Evelina children’s hospital. We felt a mixture of upset & panic that this was happening to Olly and also relief that we finally knew what was causing the seizures. Olly was put on lots of different medications to try & control the seizures and limit the amount of seizures he was having, which did help at first and we was able to bring him home, but within 10 days he was having over 20 seizures a day and he was admitted to the Dolphin ward again whilst we waited for a bed at the Evelina. Olly’s seizures were changing, becoming longer then 5 minutes and he often needed rescue medication to stop the seizures and let his body rest, it was a vicious circle of him having seizures one after the other or having medication that would knock him out, it was heartbreaking. Once we arrived at the Evelina Dr Tang spoke with us and told us that the only treatment for Olly was brain surgery but due to his age it needed to be done at Great Ormond Street hospital. Dr Tang had to meet with the surgeons at Great Ormond street to see if Olly qualified for surgery and, if so, see how urgently he required surgery. They agreed he needed the surgery but due to their schedules and theatre spaces would have to wait 4-8 weeks, which Olly had to remain in the Evelina hospital for. The next day we received news that the surgeon had informed them that they had a space become available for Olly’s surgery the next Monday, 4 days away and we had to meet the surgeon the next day to talk through what would happen and give our permission for Olly to have surgery. They told us that due to where the cells were on his brain that there was a chance that he may lose the use of his right foot. We was transferred to Great Ormond Street hospital the day before his surgery and on Monday 11th November 2019, Olly underwent his brain surgery. It was the best and worst day of our lives, leaving Olly in surgery was the hardest thing we’ve ever done and it felt like the longest day. We finally got to see Olly after 8 and a half long hours and to see him smile at us was the best thing ever, the first thing he asked us was ‘Where’s Harry?’(his big brother)💙The recovery in Olly was so fast, within 2 days he was up out of bed and trying to walk to the play room!! Four days later we left Great Ormond Street and after a check over at the Evelina we went home. Olly is amazing, such a strong boy, you would never know all he went through. The surgeons told us that they removed most of the bad cells but managed to keep it so that he has no weakness in his right foot. He is on one medication now and very occasionally will have a small seizure in his sleep which lasts less then 10 seconds and is usually a result of tiredness, adjusting his medication helps to stop this happening. We are very lucky that Olly was able to have the surgery to stop his seizures and lucky to have had all the care and support from the 3 hospitals. Whilst we was at the Evelina we was given a room at the Ronald Mcdonald Evelina house, this is a charity organisation and a lifeline for families to stay together and be close to the hospital. Whilst Olly was in hospital I was staying with him & sleeping at the hospital so the room at the Ronald McDonald house was used by Rob so he could work and then visit us most days and stay close to the hospital too. It meant that Harry could come up and stay for the whole weekends too. This was a hard time being away from Harry, he was only 7 at the time and living with his grandparents during the week, often not able to see us until the weekend, he is a brilliant older brother and we are so proud of him💙We couldn’t have got through this whole experience without our amazing, supportive families, from caring for Harry, to coming to visit us so we wasn’t alone, bringing food parcels, doing washing, watching Olly so I could shower, I will forever be grateful and love them dearly.

So the reason for opening up about our experience is because we want your money!! We want to raise as much money as possible for 4 amazing causes, the Savannah neuro ward at the Evelina Children’s hospital, the Koala neuro ward at Great Ormond Steet, the Dolphin ward at Medway Maritime Hospital and the Ronald McDonald Evelina house. I have wanted to do something as a ‘payback‘ to all the places that helped us when Olly was ill. My Dad suggested walking from Medway Maritime hospital to Great Ormond Street to the Ronald McDonald Evelina house and then to the Evelina hospital, this is about 38 miles altogether. My first response was ’thats crazy!’ but after talking it through thats what we’re doing!! My lovely Dad, David Simmons, has already started, finding different days to do each part of the journey, often doing around 7 miles at a time, which is amazing with a knee replacement and the other knee in need of replacing!! Over the Easter weekend me and Rob, along with members of our families will be completing the journey. There will be my Mum, Lorraine Simmons, my brother Daniel Simmons & sister in law Kate Trevelyan and Rob sister Vicky Hooper walking from Medway Maritime to St Pancreas station in London over 2 days and then on Easter Sunday we will be joined by my Dad, Rob’s Mum Debbie Hooper and our sister in law Nikki Hooper aswell as Olly and Harry and their cousins William & Sunny Hooper and Zachary and Jacob Simmons where we will all finish the last leg of the walk together🥰Please, please, please donate if you can. We never thought we would ever need these wonderful hospitals and charities but without them all Olly wouldn’t be where he is today.

Thank you for taking the time to read our story and donate if you can❤️