Our first family is Helen’s story.
Helen, 67, is a retired ophthalmology nurse from Falkirk.
Helen first started having seizures at the age of four. After a traumatic brain injury, she struggled with seizures every day, multiple times a day, throughout her childhood. At the age of 19, she was offered the chance to treat her seizures with sodium valproate. At the time, it was a life-changing drug and allowed her to lead a mostly normal life.
Not long after, she married her husband, Sandy. They had a turbulent start due to conflict in the marriage and lifestyle differences. In 1981, her son Ross was born, and Helen stayed at home to look after him, as was the norm at the time.
Helen says that Ross was a sweet and affectionate little boy. He was bright and reasonably healthy. He did have some gastrointestinal issues, which were believed to be caused by a hiatus hernia near his epiglottis. It was thought that this may have been why he vomited multiple times a day on a daily basis. He also had a squint, which did not seem to bother him. The vomiting damaged his teeth, which became yellow and brittle.
Unfortunately, Ross suffered a ruptured appendix at the age of five and required life-saving surgery. When Ross was 19, he spontaneously developed epilepsy after having a seizure in the shower while getting ready for a job interview. During the same incident, he dislocated his shoulder, and it would sublux many times over the following years, even after surgery.
Her marriage remained tumultuous, and she separated from her husband for a brief period after the arguments escalated into physical abuse and conflict. She agreed to reunite with him due to the social pressures of the time and his promise that he would seek help for his alcoholism.
Helen later found out she was pregnant with her second child and gave birth to a daughter in 1988 named Mhairi. Before Mhairi was born, screening tests for Down syndrome suggested there may be a high risk due to raised alpha-fetoprotein levels. An amniocentesis was performed and ruled out Down syndrome. When Mhairi was born, she had a large birthmark on her side, but otherwise appeared to be completely healthy. Helen described Mhairi as “a hyperactive menace,” always getting into trouble.
In later years, as Ross entered his 30s, his epilepsy worsened and his personality seemed more immature than would be expected for someone his age. He was prone to aggression and almost bullying behaviour. This led to a growing disconnect between Helen and her son. He eventually moved to Aberdeen and started a new life there, having a family of his own. Unfortunately, it would not last long, as he suffered a fatal seizure in his sleep at the age of 37.
Helen says that when she was pregnant with Ross, she asked her GP whether it was safe to take her medication and was told there were no known concerns. Later, when pregnant with Mhairi, she admits she did not ask.
In the early 1990s, Helen started her career in nursing and later divorced her first husband. In 2004, she met her now-husband, Russell, and found her soulmate, as she puts it. They moved to Cyprus in 2019. After Ross’s death, Helen decided to retire early.
Helen first became aware of the sodium valproate scandal while watching the news during the pandemic, but she did not initially realise the severity of it or the impact it may have had on her children and grandchildren.
Helen remarried in 2025 and continues to be a devoted grandmother. She has successfully weaned herself off sodium valproate after her neurologist noticed it was causing essential tremors and metabolic side effects.
