Epilepsy: Addison

Katie and her partner, Luke, had twin girls called Addison and Isabella in May 2012. Life changed when Addison suffered seizures and was diagnosed with a rare form of epilepsy just before her second birthday. She suffered brain injury. Mum Katie shares her story.

Published: August 2015. Date of brain injury: 2014. Child's age at time of injury: Almost 2 years 

The sonographer grinned. ‘It’s twins’, she said. My partner, Luke, 31, and I stared in amazement at the monitor. I was only eight weeks pregnant, but sure enough there were two tiny but distinct heartbeats on the screen. It was 2011, and Luke and I had recently moved from the UK to Perth, Australia. We were delighted when I discovered I was pregnant, but just three weeks into my pregnancy, I began to suffer from acute morning sickness. Sometimes even a sip of water would send me flying to the bathroom. I hoped the sickness would soon pass, but if anything it got worse. With Luke away working offshore on oil rigs, the practicalities of raising twins began to sink in and we decided to move home. As soon as we were able, we packed up and returned to the UK to stay with my parents in Lowestoft, Suffolk. Our twin girls were born by Caesarean section at the James Paget Hospital, Great Yarmouth, on 3 May 2012. Isabella arrived first, weighting 6lb 11oz, and soon 6lb 9oz Addison followed.

Enjoying life with twin girls 

Looking after two newborns was exhausting, but we loved watching our girls curled up in their cot and seeing them play together as they grew. As the months went by and they learnt to sit up, then crawl around, it became clear that, despite looking identical, their personalities were very different. Addison was feisty and boisterous, while Isabella was quieter and tended to follow her sister’s lead. We moved into our family home, a short distance from Mum and Dad’s, a few days after the girls’ first birthday in May 2013. Isabella watched intently as Addison took her first steps. Soon, Isabella tentatively toddled after her. We clapped and laughed at their achievements. For us, life couldn’t get much better. In April the following year, Isabella came down with a temperature. Wanting to keep a close eye on her, I kept her on the sofa next to me, while Addison napped upstairs. After an hour, I popped up expecting to see her awake and grinned in her cot. Instead, she was lying lifeless, eyes closed and lips blue. Her whole body was sweating and shaking. I screamed in horror. Terrified, I scooped Addison into my arms, raced downstairs and laid her on the hallway carpet. There, I called for an ambulance and then rang my mum, Debbie, 59, who rushed straight over. A nurse, she was used to staying calm in emergencies and could see Addison was having a fit. Within minutes, the paramedics arrived and gave medication to ease the fitting. Then, with Addison still unconscious and shaking, we were rushed to the James Paget. I sobbed, holding her trembling hand. I was terrified that we were going to lose her.


In hospital, my poor little girl was heavily sedated until the doctors managed to get the seizure under control. Luke was working on a rig offshore, but thankfully his company arranged for him to be flown straight home by helicopter. Within a few hours, Addison had stopped fitting and began to come round. It was a huge relief, but immediately I noticed she couldn’t lift her right hand or move the right side of her face – as if she’d had a stroke. Over the next few days, we remained rooted at Addison’s bedside as her condition deteriorated and she suffered more, prolonged seizures. Her high-pitched screams were unbearable to listen to, and Mum recognised them as a sign of pressure on her brain. With her life still hanging in the balance, Addison was transferred to Addenbrooke’s Hospital, Cambridge, where she was admitted to intensive care and put on a ventilator. Doctors explained Addison had a rare form of epilepsy called hemiconvulsion-hemiplegia-epilepsy syndrome and that she has suffered some brain damage. he said other children with this condition had not done very well. Luke and I were devastated at such an unpromising outlook. We could only watch and pray. Our twins’ second birthday passed on a haze. With strong medication, Addison was gradually taken off the ventilator but she was still very poorly. But one thing always cheered her up – visits from Isabella. As soon as she toddled into Addison’s hospital room, she’d scramble onto the bed and give her sister a kiss. Although Addison couldn’t cuddle her back, her face would shine with happiness.


By the time she left hospital at the end of May, her seizures were mainly under control. Still, there were huge struggles ahead. She couldn’t walk or talk. Even simple things such as holding her cup in her ‘bad’ hand would have to be relearnt. Luke and I nicknamed it her ‘magic’ hand as we tried our best to encourage her and make things less frightening. But there weren’t just physical changes. Addison’s whole personality had altered. She was no longer confident and chatty. Instead, she was timid and withdrawn. She also suffered irrational rages, sometimes lashing out at us in confusion and frustration. Seeing Isabella chattering and playing happily was a reminder of what Addison had lost. Last August she began an eight-week rehabilitation course at a centre for children with brain injuries. The rest of the family went too and the therapists encouraged Isabella to join in with speech and physiotherapy sessions.

Our girls: an unbreakable team 

Now it was Isabella’s turn to show her sister how to talk and walk again. ‘You can do it, Addison,’ she seemed to be saying, giving her sister a reassuring smile as Addison gingerly put one foot in front of the other. Watching my girls splashing around with other children in the hydro pool or throwing balls to each other, I knew that they’d get through anything. Where once she’d been the leader, Addison now looked to Isabella – and her once timid sister rose to the challenge. Back home, Isabella carried on being Addison’s little teacher. Every word that she said, Addison slowly mastered too. Watching Isabella climb on to the sofa, Addison gradually learned to shuffle over and pull herself up behind her twin. In January this year, when Addison finally held her cup with both hands, I wanted to shout it from the rooftops. For the girls’ third birthday, we threw a party and disco for them at the local community centre. It was a wonderful day. The memory of watching them blow out their candles together will stay with me forever. But we will live in fear that our little girl will suffer more serious seizures – especially during the night.  We also raised enough funds to have a specialist hydro pool installed at home. Addison may need brain surgery in the future. She’ll never fully recover, but we’re confident that she’ll live a full and happy life. It’s been a tough journey, but seeing our girl laughing and splashing happily together in the pool gives us hope. Our girls will always be an unbreakable team.” 
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