A month old baby was having 100 seizures a day as a mum is bravely sharing their journey to help raise vital awareness.
Ronnie Rodgers-Rafferty was just two weeks old when he began to have "strange movements". Despite an overnight stay in hospital, all was well until he was six weeks old.
Mum Kate Rodgers was home alone when her son, who was born in July 2018, had a seizure that did not stop. After calling an ambulance, Ronnie needed rescue medication and he was soon diagnosed with epilepsy.
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But Kate told the ECHO from the age of five months, things "spiralled and became uncontrollable" and he soon began to have around 100 seizures a day. It was then they decided to look into surgical options.
Kate said: "Having brain surgery so young is a massive deal so they had to make sure they could do it, where they needed to operate and what the outcome would be, so we had several tests in Manchester and Alder Hey.
"There was a cancellation on December 19, 2019 and he was in surgery in Alder Hey from 9am until about 6pm to remove the part of the brain that was causing these seizures. After that it was a massive success, he was seizure free for a year. We went from 100 a day to 0."
Having surgery at the age of 17 months, Kate said staff at Alder Hey were "fantastic and amazing", but soon the seizures returned and Ronnie, now four, is having seizures in his sleep, with the odd one during daytime.
Kate added: "We are looking into more surgery so are waiting the results from Alder Hey. After the first surgery it did affect his left arm and hand and he needed physio."
Ronnie's seizures include eye twitching and blinking and shakes on his left side which can last up to a minute each time. Kate said: "When people think of epilepsy, they think of being on the floor full convulsion but there's different types of seizures.
"A couple of times we've had to call an ambulance and he's been given rescue meds but it's tough on us all. It's hard not knowing about epilepsy, you find yourself on Google at 2am always looking to the future.
"I've learnt to not look too far ahead, focus on what's happening now. We don't take our eyes off of him for very long and it's a constant battle things need but having a child with additional needs brings so much joy."
For a while, Kate and her partner were setting an alarm every hour to check on Ronnie in his sleep, but the Manchester parents now have monitors they use to keep an eye on him. Kate now wants to raise awareness so others know they are not alone.
She said: "Epilepsy is a disability but there's different types of seizures and people can still lead a normal, happy life. I used to Google looking for a happy ending. I haven't got a perfect ending but it's a happy one. Ronnie is in school, he's walking and talking and reading and writing.
"Ronnie's seizures are in his sleep so we don't have to worry about him having them at school but there are risks, there's an increase of SUDEP (Sudden Unexpected Death in Epilepsy). It's something that's there and needs to be talked about and there are charities that can help."
Kate said she has been receiving "horrible comments" about her son's condition but urges parents to know the signs and talk about the condition as well as seeking support from various charities including Daisy Garland charity.
She said: "Take one day at a time. Ronnie's journey isn't perfect but we are happy. When you have a baby you have an idyllic view of what life will be like and if it's not like that you won't be happy, but you will be."
Epilepsy
According to the NHS, epilepsy is a common condition that affects the brain and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works.
Possible seizure symptoms include:
- uncontrollable jerking and shaking, called a "fit"
- losing awareness and staring blankly into space
- becoming stiff
- strange sensations, such as a "rising" feeling in the tummy, unusual smells or tastes, and a tingling feeling in your arms or legs
- collapsing
More can be found here.
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