William James came into the world on Saturday 12th July 2014 at 5.31pm. He was the most beautiful baby we had ever seen, flawless in every way. Because he was almost a month early, the doctors and nurses took special care of him and paid extra attention to his early needs. After a rocky start with jaundice, William came home with us at eleven days old and we finally began to settle as a perfect little family of three. As our first born, we often second guessed the decisions we made for William, as does every first time parent, I assume. However when William was about 4 months old, I just knew something wasn’t quite ‘normal’ about his development. He was meeting some of his milestones but they were always pushing the boundary of ‘average’ in timing. It didn’t take long before we had taken him to our GP and called his Health Visitor round. “He is just a lazy boy!” was the response we were given. “Just keep an eye on him, he will catch up.” It still didn’t feel right.
When William was 10 months old, he had his first seizure. I was in the kitchen when my brother screamed for me. “He’s not breathing, I don’t know what happened!” I heard him yell. I ran in and grabbed him, held him in my arms on his side and waited for the paramedics to arrive. Twelve minutes. Twelve minutes and they were on our door with oxygen on him.
Doctors at the hospital told us it was a febrile seizure. He had bronchiolitis but would be just fine. They were concerned that William wasn’t able to ‘shut down’ during this seizure as children normally would so they gave us rescue medication and taught us CPR, just in case.
Two weeks later, he had a second. This time, 45 minutes.
The consultant this time explained how this was more concerning, they were regular and lengthy but still febrile.
A few months passed and again William had two within two weeks. The second of the two occurred at night. I heard William grunting in his cot and thought he was looking for his dummy. I went straight in and there he was…consumed by the seizure. We followed our usual practice, rescue meds and ambulance. It didn’t stop. More meds. It didn’t stop.
Over two hours in resuscitation and he was still seizing. Just as the helicopter was being phoned in, he stopped. A huge sigh of relief descended in the room and within 12 hours, our beautiful bouncing baby boy was back with us.
This episode triggered a vital genome test. William was diagnosed with Trisomy 5p at 15 months old. He was to have significant intellectual disability, would likely not walk or talk and would probably develop epilepsy. A few months later, the epilepsy diagnosis followed after William’s seizures developed into afebrile tonic-clonic and absence episodes.
The neurologists at Manchester Children’s Hospital were quick to get William onto Epillim and it worked wonders, taking all of his seizures into control immediately. Unfortunately, after a year or so the seizures began to fight back and we spent Christmas in hospital where William suffered 35-40 episodes a day. A second drug was introduced, Kepra, and we were winning once again.
William began mainstream school in 2018 with his peers. He had defied the odds and whilst he still could not ‘talk’ he had a beautiful way of communicating with everyone around him. He not only learnt to walk, he would run around the playground, chasing his friends and giggling with them. His little buddies took him under their wing and his teachers helped him thrive. It was the most wonderful thing to witness. We even got to sit with his teacher on parents’ evening. She spoke of how he was blossoming and developing crucial relationships. He was so happy there. He was two years seizure free and had been weaned off Epilim. He was doing great! His little sister, Evelyn had joined the family in 2017 and we had another baby on the way. He was a wonderful big brother and we were excited to see how he would respond to a second sibling.
Wednesday 19th December 2018 William had a seizure in the night. We don’t know when it started. They couldn’t make it stop.
For 19 hours the doctors fought to save him even with the knowledge that during the seizure, his brain had suffered ‘catastrophic’ damage. They let me wash and change his nappy. Our Priest came to say a blessing and his family were called to say goodbye.
I held my baby as he took his final tiny breaths and he slipped away in my arms knowing he was the most loved little boy in the world. He was just four years old.
It took almost 12 months for the coroner to conclude. Five letters… SUDEP.
We talk about William every day. His baby sister came into the world less than four weeks later and we are determined for our children to know who William was. Very early on, we knew that we had to raise the profile of epilepsy awareness. We are only at the very beginning of our journey with grief but feel very strongly that epilepsy should not be allowed to tear families apart as it has done ours. William’s Warriors has become a crucial part of our lives and the lives of those around us. In 2019, we raised £9679 through a series of fund raising events. We want this to be something we can build onto every year. William’s life was short but so powerful. He changed the lives of everyone he met. He made them more understanding, made them listen more carefully and love more freely. We need to make sure his story continues. Our aim is to create a legacy for him so that he can save the lives of other sufferers