Sussex mum reveals heartbreak of daughter’s death after epileptic seizure
A mum has revealed the heartbreaking moment when she learned her 22-year-old daughter had died following an epileptic seizure.
Sandra Haines spoke out this week in a bid to raise awareness of epilepsy and its effects.
Sandra, who lives in Ardingly, ‘braved the shave’ this week to raise money for the Young Epilepsy Society, as well as a children’s cancer charity.
And she told how epilepsy had devastated her family.
Sandra had been going to pick up her daughter Lauren from her home in Haywards Heath for a family meal out.
“I got a phone call from a neighbour saying that Lauren was being resuscitated,” said Sandra.
Shocked and fearful, she arrived at Lauren’s flat. “There were police, ambulances and people all over the place.”
At first, she wasn’t allowed to see Lauren but was eventually let into a room where she was.
“I saw her body on the floor with tubes all down her. They were trying to work on her but then they said they had to call it.
“They said she had probably died before they got there.
“I told them not to stop. It was awful. I just didn’t want to leave her like that.”
Sandra later learned that Lauren had gone to wash her hair when she suffered a seizure. Sandra’s 14-year-old nephew had been there at the time and called an ambulance and started resuscitation. But it was sadly in vain.
Lauren had suffered a number of seizures over the previous six years after experiencing her first one when she fell from a horse.
She had nearly died on another occasion and had ended up on a ventilator in hospital.
But since her death in 2016, Lauren’s sister Tiffany has also been diagnosed with epilepsy and the whole family - including Lauren’s brother Martin and other sisters Shannon and Bethany - are devastated at how the illness has affected them all. Sandra herself has since suffered with her mental health.
Tiffany started having seizures when she was 18 and was diagoned with epilepsy a year later. “I didn’t quite believe that I had what unfortunately took my sister’s life just a few years before,
“It’s honestly a horrible disability. It made me feel very violated a lot of the time after waking up from a seizure very confused.”
She also felt herself ‘left out.’ “My friends were out partying and having fun which I couldn’t do, not being allowed to drink or be in a club due to the strobe lights etc.”
She ended up feeling alone and depressed. “I was told I wasn’t allowed to drive.
“It hit me hard knowing it’s something I wouldn’t be allowed to do so I would never get that sense of freedom that other teenagers experienced.
“I’m also recommended not to bathe if no one is present so that makes me feel a bit degraded in a sense.
“I also struggled with past relationships and friendships as I’m aware seeing someone have a seizure can be very traumatising for some people and a lot of people may not know how to manage someone seizing or they would just rather not have the hassle of someone seizing in the middle of an outing!”
But, she said: “What I have now learnt though after living with it for a few years is although epilepsy is a life-changing disability you CAN still live your life as well as you want.
“There’s a few things you have to give up along the way but with the right friendships/relationships you can still experience a full life.”
Tiffany has a two-year-old son and says “it’s nerve racking a lot of the time as I would hate to hurt him during a seizure but I trust my epilepsy nurses and their judgements/recommendations, after all, they have dealt with a lot of epilepsy patients - so know best.
“I understand now that there really is light at the end of the tunnel, there is still more to life and it’s definitely not the end, after two years we have finally found two medications that seem to work for me and are keeping my seizures at bay.
“For anyone that may have a recent diagnosis, please take the professionals’ advice and take your medication!”