AFTER witnessing her baby daughter fall into a series of sudden paralysing fits, a Bolton mum is determined to make sure other families do not go through the same.
Tania Worden, who lives on the Oldhams Estate at Sharples, took to the skies on Sunday as part of her fundraising drive for Young Epilepsy UK and the Royal Bolton Hospital’s E5 children’s ward.
The 24-year-old mum-of-two completed a 15,000-feet sky dive to support the national charity’s work, which she has been doing since her healthy new born baby suffered from her first epileptic attack.
Ruby was just eight months old when she suddenly started convulsing in front her dad Martin Higson, also aged 24.
Rushed to the Royal Bolton Hospital, the little girl was quickly diagnosed with epilepsy and spent 12 days undergoing treatment – including time on the high dependency ward.
Tania said: “The first one she had, her dad said her whole body was shaking, her eyes were rolling and she was foaming at the mouth.
“I thought she may be dead, she was so still. They had tubes all over her, for anything from ECG, oxygen, medication. It was horrible.
“My dad walked through the doors and walked back out and burst out crying, I had never seen him cry before then.
“She slept for six hours but at 10 o’clock that night it started again. I remember screaming for someone to help me.
“In the 12 days she was at hospital she had 200 to 300 seizures, some lasting just 10 seconds, some 45 minutes.
“They tested her for meningitis but the epilepsy diagnosis came pretty quickly. They sat us down but after saying what it was, the rest went over my head. I didn’t know if she could have a normal life, go to a normal school. I knew very little about epilepsy, all I felt was shock.”
The situation did not get easier for the family – including big sister Scarlett, aged three – after Ruby was discharged from hospital.
Her fits continued, leading to more hospital visits and fears for her future.
Eventually Tania was forced to give up her job to care for her daughter fulltime. Now 21 months old, Ruby has to a take a series of treatments to help her cope but the condition and medicine have affected her life.
Tania explained: “She was born early at 34 weeks so we weren’t sure of her development but she barely speaks, only saying mum and dad. She’s unsteady on her feet and her hair falls out from the medication and she is always tired, so she has to sleep a lot.
“It’s very hard and even harder with Scarlett, who knows what’s going on and worries about Ruby.
“A lot of people think epilepsy is falling over and shaking, but it’s not like that. She can just freeze up, or start pulling at her hair, or recently she will be walking and her eyes will roll back but she will keep walking and knock into something.
“Epilepsy can be very dangerous. We just don’t know what the future holds.” Following the diagnosis, Tania started looking for advice online and came across Young Epilepsy UK.
The charity works exclusively for the 112,000 children and young people aged 25 and under with epilepsy and associated conditions, offering support, diagnosis, assessment and rehabilitation, and undertaking research into treatments.
Inspired to help, Tania has teamed up with her friends to fundraise.
Starting off by signing herself up for Sunday’s skydive in Lancashire, the initial aim was to raise £500. However a campaign developed, dubbed #doitforruby, and the team have taken on anything from sponsored silences, runs and car boot sales, so far raising more than £3,000.
The money will now be split between the charity and the Royal’s E5 ward where Ruby received most of her treatment.
Tania added: “I would like to think I can stop others going through what we did.
“When we were in hospital they told there wasn’t many babies Ruby’s age who had been diagnosed with epilepsy.
“After we started the fundraising I opened a Facebook page and told the story of how Ruby ended up in hospital. I was not trying to make people feel sorry for us, it was to show the reality of epilepsy and what it does.
“As hard as it is for us to tell the story, we can’t forget about it and we don’t know when it is going to stop but people need to know about how it affects people’s lives.”
To find out more about the #doitforruby campaign visit bit.ly/2nmDhhj or the ‘Fundraising for Young Epilepsy #doitforruby’ Facebook page.