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‘My girl’s chronically ill… but we can’t access treatment’ – Erin Wall’s mum in desperate plea over Armagh teen with neurological disorder

A mum's desperate plea over Richhill teen whose neurological disorder is so rare it doesn’t qualify for care package

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FORTITUDE: Erin Wall puts a brave face on her condition, carrying on with life as best she can

FORTITUDE: Erin Wall puts a brave face on her condition, carrying on with life as best she can

Liam McBurney/RAZORPIX

FORTITUDE: Erin Wall puts a brave face on her condition, carrying on with life as best she can

A Co Armagh teenager’s life has been devastated by a horrific neurological condition which is so rare that there is no treatment in Northern Ireland.

At her worst, Erin Wall (14) can suffer paralysis for hours; lose the power to walk for days and the ability to speak and see due to Functional Neurological Disorder (FND).

The Portadown College pupil, who lives in Richhill, has spent the past few years undergoing countless medical tests but because FND is so rare there is no treatment path available to her.

For her distraught mum Ruth, it has been an agonising time, watching her daughter’s quality of life disappear with no hope of a care plan to manage her chronic symptoms.

Now mother and daughter are sharing details of their experience to help raise awareness of the condition and also put a spotlight on a new support group called FND Matters NI which aims to lobby for better medical care for patients.

And Erin, along with former classmates at Clounagh Junior High School in Portadown, have raised £3,600 to help the charity get up and running.

Erin admits: “It can be hard because I have good days and bad days but I’ve had it so long now I just get up and get on with it.

“I can’t do simple things anymore and being reliant on people around me is hard.

“The support group has been a relief because I did feel very isolated and alone and now being able to talk to others who understand what I am going through has been great.”

It is thought there are 1,500 people in Northern Ireland with FND.

It is a neurological disorder that affects how the brain and central nervous system send and receive signals.

While conditions such as Multiple Sclerosis and Parkinson’s disease leave discernible physical and neurological damage, with FND there is no structural damage or disease which makes it difficult to treat.

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.

Erin struggles with most of these symptoms including fatigue, painful muscle spasms, blackout episodes, temporary paralysis and seizures.

She can spend several hours unconscious and be left paralysed afterwards, unable to walk or see.

The severity of her condition impacts on all her loved ones — sister Naomi (16), brother Lewis (11), dad Stevie (50), a project manager, and mum Ruth (46).

For Ruth, who is a director of her family business Craigavon Plastics Limited and has also just set up her own online gift shop Maggie K Gifts, leaving work to go to Erin when she collapses at school is usually a weekly occurrence.

She says: “It is a crazy, crazy illness and it’s hard to believe that someone can experience such a vast range of symptoms that are so significant and yet get no support.

“The way I explain FND is it’s 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 be able to walk for a day or two, not able to talk or make it into school for a week.”

Erin’s symptoms started when she was in primary six with chronic ear pain and tinnitus.

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Erin Wall (14) from Richhill

Erin Wall (14) from Richhill

Liam McBurney/RAZORPIX

Erin Wall (14) from Richhill

In junior high she started having what appeared to be fainting spells which became more regular and were happening in class and during sport.

Ruth recalls: “In those early days she was never away from hospital and consultants and we even took her to some private appointments because the waiting lists were so long.

“She first went to Ears Nose and Throat and then had all sorts of cardiac investigations but nothing was found to be wrong.

“In August two years ago she had her first seizure at home. It was very significant and she was taken to hospital by ambulance and her symptoms really seemed to step up from that point on.

“Since then she has regular blackouts and seizures as well as falling over because of her balance.

“The symptoms can evolve and change and that’s what we are experiencing with Erin now.

“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.

“They have settled to an extent and 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 in 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.

“Sometimes when she comes round she then suffers from paralysis, and loss of speech. Her vision can also go. 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.

“Fatigue is a real issue and she has sensory problems and cognitive issues which affect her concentration, memory and focus, especially after episodes of paralysis. It is truly horrendous.”

Neurology has also carried out numerous tests and investigations but they too were at a loss on how to treat Erin.

It was through a Facebook group that the family realised Erin has FND.

Now a local support group has been set up to lobby for a treatment path to be established for people with the disorder.

Ruth adds: “We managed to get some physiotherapy for Erin through our GP but that is it.

“We have never had a medical professional sit down and explain to us what is happening.

“FND is one of those conditions that doctors don’t understand and it doesn’t tick enough boxes to qualify for certain treatments.

“There are no physical abnormalities yet she experiences significant symptoms that are like MS and epilepsy but the specialist services and support available to those patients aren’t available to Erin.

“Her schools have all been fantastic in supporting her and it’s credit to Erin that she is such a resilient person who just keeps going.

“We don’t know what the future holds which is scary and we are just so glad the charity has been set up for support.

“It is fabulous that Erin now has other teenagers going through the same thing to talk to.

“Erin should be enjoying the best years of her life and instead everything is a struggle for her but the most frustrating thing is the lack of support from the medical profession.

“Hopefully people will get behind the charity FND Matters NI and help us to secure treatments for patients in Northern Ireland.”

  • You can find out more about the charity at www.fndmattersni.org.uk

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