Richard's mother Vic, tells us about her son's epilepsy and how they found support through Young Epilepsy
Rich was nine years old when he was first diagnosed with nocturnal seizures. His family were shocked and felt guilty for not picking up the indicators sooner – particularly as his mother has partial and complex epilepsy.
What triggered these seizures were initially difficult to identify, however, Rich’s family believes it was due to his tiredness and stress. These escalated during his SATs exams, where his results plummeted. One of the factors towards this was his struggle to adapt with the intake of Tegratol and Epilim which had led to further vacant seizures, tiredness and memory loss.
In addition, Rich is small for his age as he was a premature twin and has hyperextension, an excessive joint movement in which the angle formed by the bones of a particular joint is opened, or straightened, beyond its normal, healthy, range of motion.
Despite the setbacks, Rich’s home life was a happy one, but he noticed friends at his primary school changed their attitude towards him, for example, they would no longer invite him for sleepovers. It has also impacted his social life as he stopped pursuing his hobbies he did independently such as cycling and swimming. He no longer has any alone time and even during holidays with family, he’d be with his brother at all times.
In addition, the primary school he recently left before heading to secondary education didn’t have the sufficient education or resources to support him. Many around Rich felt they didn’t sympathise with his situation because they couldn’t see the seizures. On one occasion, a teacher asked him to wear a bright red cap so he stood out in swimming classes. Others were empathetic with one implying that he should carry on as normal and be accountable for remembering to take his own medication at lunch times.
Rich’s mother searched for solutions online and through her research found Young Epilepsy’s social media pages. The guidance on these pages were not only invaluable to her but it helped Rich appreciate what is available. After contacting Young Epilepsy, they were able to fund a support nurse at Birmingham Children’s Hospital who consulted on Rich after his initial diagnosis.
With this support, Rich has also given back generously. In August 2016, he opened a Young Epilepsy Fundraising Group on social media, encouraging everyone in the Staffordshire area to raise money for his, and other’s efforts. It has attracted more than 300 Facebook members. So far, Rich has completed a mud run with his brother, a 5K fun run and he independently organised a 'Wear Something Purple on Purple Day' where each pupil paid £1 for the cause.