Now aged 14, the Clounagh Junior High School pupil is dealing with a multitude of daily symptoms.
These include fatigue, painful muscle spasms, blackout episodes, temporary paralysis and seizures which have lasted up to three hours.
Her mum Ruth reveals that she first started seeing symptoms of what they now know as ‘Functioning Neurological Disorder’ (FND) when she was still at Hardy Memorial Primary School.
Ruth revealed: “Erin was really into reading and played loads of sports and was involved with Portadown Hockey Club.
“Her symptoms probably started four, maybe five years ago if we look back with hindsight. In P7 when she was aged 10 she started experiencing lots of odd symptoms. She had chronic ear pain and tinnitus. She was having dizzy spells. She was starting to have balance problems. She would have been walking and her legs would have gone from under her - a combination of lots of little things. Then she went through investigations with ENT (Ear, Nose and Throat) which didn’t come up with anything and she was passed on to neurology. They didn’t come up with anything either but managed to control the pain.
“Things started to increase in severity in her first year at Clounagh when she had fainting spells and these increased in regularity. Throughout that year they were happening on a really regular basis and on some occasions she wasn’t coming around very quickly and ambulances were called on a regular basis.
“In August two years ago she took her first seizure.
“She has been out for a walk with the dog. She came into the house. Her arm was shaking uncontrollably.
“We got her to sit down but within minutes she was in a full convulsive seizure and it went on for 20 or 30 minutes. She was unconscious for most of it.”
Erin, who is really into her reading said: “I started having a number of tremors and twitches in my hand two summers ago. I didn’t think much of it at the time. I didn’t really think it was anything too big or to be concerned about.
“Nothing big, other than the twitches and tremors, happened until I actually had my first seizure which started from a tremor in my hand in late August 2019,” said Erin, adding that it was terrifying.
“They called the ambulance but it took mum nearly a year to actually diagnose.
“The doctors didn’t really know what it was or how to treat it.
“There are no specialist services in N. Ireland for children and to we have been unable to access treatment in the very limited number available in the UK as we do live not in the correct location or the services are only open to adults. We have been unable to find any private service providers.
Erin explains that her seizures now vary. “Sometimes I will be shaking, sometimes unconscious, sometimes I just can’t move.”
Mum said: “It’s been a long road. There was a period when she was having seizures every day, sometimes two or three times a day and some of the seizures could last an hour and more. The seizures have settled to an extent. With FND symptoms can change and evolve. At the minute she has periods where we have had 10 days without a seizure but previous to this we were having three or four a week. The seizures vary in type. Sometimes Erin has a ‘drop attack’ where she is standing and then just hits the ground and will be out. Others include convulsive seizures and the worst case, the seizure episodes have gone on for three and a half hours and she has ended up in hospital after some of those. A few months ago she had a blackout and collapsed at the top of the stairs and she was out for an hour and a half.
“The downside of some of these, particularly the bigger seizures, when she comes round she then suffers from paralysis, loss of speech etc. We have had occasions where she couldn’t walk for four or five days. She has lost her speech for anything between an hour and 24 hours.
“It is a vast range of symptoms that I never would have believed anyone could have had,” said Ruth adding that Erin has ongoing issues with severe fatigue.
“The way I explain FND is, its a bit like a roller coaster. It is so incredibly unpredictable. Erin could be having a really good week and then boom, she could be on the floor blacking out for an hour and a half and then not able to walk for a day or two, not able to talk or make it into school for a week.”
Ruth said: “Erin is very bright and very intelligent. The way she has managed to get through this is beyond incredible. Her whole time at Clounagh has been battling through this condition. She works incredibly hard and she gets very frustrated when her condition stops her doing those things.
“She has had weeks at a time when she has struggled to get into school but keeps trying to do the best she can. How she keeps going I don’t know. She used to really enjoy hockey and she had to give it up.”
Ruth is very upset at the lack of support for anyone who has this condition.
“We have struggled to get any help for Erin given the severity of what she goes through. It is appalling,” said Ruth, adding that they had seen three GPs in Portadown Health Centre and neurologists who have been unable to do anything to help.
And her mum Ruth paid tribute to everyone at Clounagh JHS. “The school has been nothing short of incredible.”
Erin’s English teacher Jolene Corrigan is also full of praise for the 14-year-old who, she said, is very bright and intelligent.
The school is holding a series of fundraising events to raise money for FND Matters NI.
Her school said: “FND affects approximately 1500 people in NI. Within school FND affects one of that 1500. Erin Wall has always been a valued member of the school community, but in watching how she has bravely battled FND since her diagnosis we now want to stand as a school community, recognise how remarkable she is and help her continued journey by making a whole school contribution to FND Matters NI.
“FND is a condition that affects how the brain and central nervous system send and receive signals. In conditions such as Multiple Sclerosis and Parkinson’s Disease discernible physical and neurological damage is present, but with FND there is no structural damage or disease, but rather a functional problem. Symptoms can vary in frequency and severity and can include weakness, pain, tremors, non-epileptic seizures, headaches, slurred speech, blurred vision and blackouts to name only a few.
“Very often the brave individuals who have this condition feel marginalised and misunderstood due to the lack of physical ‘evidence’ they present with and the void of knowledge there appears to be about their illness; even amongst medical professionals in specialist neurology services. That’s where we can step in!
“By donating funds to FND Matters NI we can raise awareness of the condition, inform others and provide peer support to those with FND and their families. We ask you to join us as a school and wider community and give generously.”
There are 3 ways in which you can help our efforts:
1. Donate via the Just Giving Link below. Every £1 that you donate will give you one ticket for our raffle prize draw.
2. Buy raffle tickets at a cost of £1 each by sending money in with a pupil to school.
3. Buy a number square at a cost of £5 each for a chance to win a framed archive photo of George Best (valued at £400!) kindly donated by Getty Images
Trust admits inability to provide full cover at GP Out of Hours after 6k shifts go unfilled Read full story here
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