May 31st 2024.
Meet Daniella Jane, a loving mother pictured with her sweet newborn son, Ronnie. Tragically, Daniella passed away from a sudden and unexpected death caused by her epilepsy. Her family is left devastated and now fear that her younger sister, Georgia, who also has epilepsy, may suffer the same fate.
On January 24th of this year, Daniella's partner, Reggie, found her lifeless in their bed in Romford, East London. Little Ronnie, only nine months old at the time, was peacefully sleeping in his cot just a few feet away. The post-mortem results, which Daniella's mother Kerry received last week, revealed that she died from a condition known as sudden unexpected death in epilepsy, or SUDEP.
As explained by the charity Epilepsy Action, SUDEP is when a person with epilepsy passes away without any clear reason. It was a term that Daniella's family had never heard of until she received a letter from her doctors last year, warning her that she was at risk. Her mother, Kerry, suggested that she speak to a specialist about it and Daniella had an appointment scheduled for just two weeks after her death.
In an effort to raise awareness and prevent others from going through the same tragedy, Kerry has started a petition on Change.org. She is calling for people diagnosed with epilepsy to be automatically provided with information about the risks of SUDEP. She believes that if she had known about the dangers, she would have moved in with her daughter to ensure her safety.
Kerry's heart aches with the thought of her daughter's passing and the possibility of her other daughter, Georgia, facing the same fate. She regrets not being aware of the severity of the situation and wishes that someone had highlighted it for her. Even the funeral home had never heard of SUDEP, adding to the family's shock and devastation.
Reggie's call to Kerry on that fateful day was one that no parent should ever have to receive. Daniella's brain had just "completely switched off," according to the doctors. She was only nine when she had her first seizure, and she had been having them 20-30 times a month since then. Despite trying different medications and jobs, Daniella's condition only worsened, especially during her pregnancy with Ronnie in 2022.
After Ronnie's birth, Daniella's seizures became "out of control," and doctors advised her to have a caesarean section for the baby's safety. Kerry and Reggie were constantly keeping an eye on Daniella, but bills had to be paid, and Reggie couldn't be with her all the time. She even contacted the hospital to inquire about genetic testing, but was told there was no need for it. Instead, she received a letter stating that her uncontrolled seizures put her at risk for SUDEP.
Kerry has donated Daniella's brain to the Epilepsy Society for research, hoping to find out why she became a victim of SUDEP and why her brain simply "switched off." She is also trying to raise awareness and support for her campaign by sharing her story and starting the petition.
Rebekah Smith, deputy chief executive at Epilepsy Action, confirms that epilepsy can have a negative impact on a person's mental health, which can prevent them from seeking proper support and care. This, in turn, can increase the risk of SUDEP. While rare, affecting only one in every 1,000 adults with epilepsy each year, there are certain factors that can increase the risk, such as not taking medication as prescribed.
To support Kerry's campaign and sign the petition, visit her Change.org page. For more information on SUDEP, please visit Epilepsy Action's website. Let's spread awareness and prevent more families from experiencing the devastating loss that Daniella's family has gone through.
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