Family of Derry teenager Kian urge people to back FND petition

Kian Doherty (15) was diagnosed with functional neurological disorder (FND) in October 2019, over a year after he first began experiencing chronic nerve pain, fatigue, mobility issues and other health problems.

His mother Christine shared the story of the battle to get her son diagnosed and to get support in place to help raise awareness of the condition and to urge people to add their names to the petition to have it discussed at Westminster.

Christine told the Journal that since Kian was diagnosed many more people in Derry, including some of her own friends, have been also been diagnosed with the hitherto little known condition.

Kian’s symptoms first presented when he was just 13. “He had developed stomach pain and had to be sent home from school a lot. We were running to the doctor and being referred to the hospital week after week,” his mother recalls. “He was initially diagnosed with non-specific abdominal pain, which apparently is quite common in that age group.

“They were thorough enough with tests the first six to ten times but after that it was blood tests and urine tests which always came back clear, yet he was lying crying in pain and he had an increased heart rate because he was in pain. It was very obvious he was in pain, he couldn’t walk, he couldn’t straighten up.”

Later it was suggested Kian may be suffering from abdominal migraines and the family tried everything from holistic and herb therapies to conventional medicine, but nothing worked.

DIAGNOSIS

Following an x-ray in July 2019 Kian underwent faecal impaction treatment to relieve pressure and he improved somewhat. Christine and husband Paul and Kian and his brothers Ryan (17)and Evan (11) then went on holiday to Spain and the teenager had seemed to rally, while still a little fatigued. But after returning to Derry his condition rapidly deteriorated again and by October he couldn’t walk.

Speaking about his diagnosis, Christine said: “What happened was he was in hospital for a full week and he had to have an emergency MRI to confirm what it was. They said it’s either a tumour or MS or a condition called FND. The consultant said, we don’t want it to be a tumour or MS so we are rooting for FND and when it was confirmed it was FND I was going, that is great, but I had no clue what that meant.

“We just thought he couldn’t use his legs but there wasn’t anything physically wrong with his legs. I thought rehab and he would be back to himself but it wasn’t just that.

“ Later they explained it to me that it was like a brain injury from a car accident without the car accident. There is memory issues, cognitive issues, recall issues, there’s pain sensitivity, sensory issues. But I didn’t know that back then. Don’t get me wrong I prefer that it’s FND to the a tumour or MS but FND comes with its own plethora of issues and no-one can tell you how long it is going to last; no-one can tell you if he is going to walk again.”

Kian returned for a second MRI on his spine but spasms associated with the condition meant it couldn’t be completed and then there were difficulties securing a new appointment. The family had a long wait for physical supports and a care package to be assembled, and in the meantime Lumen Christi GCSE student Kian had to miss a lot of school and would have remained virtually bedridden had it not been for the help of the British Red Cross in Campsie.

Christine explains: “Every year if a Star Wars film comes out at Christmas myself, Paul and the three boys go to cinema to see it. It’s a family ritual and that year I had to hire a wheelchair from the British Red Cross. They were absolutely amazing because for four months he didn’t have any physio, no wheelchair, no nothing.

“For two weeks we had nothing but crutches from his brother who had broken a toe before, but that aside for four months Kian was literally lying in a bed. But in December I refused to let us miss the trip to the cinema and we learned that the British Red Cross in Campsie hire wheelchairs and other resources out and it is only supposed to be short term but they let me hire one for four months until he got his own chair from the Trust. He could not go anywhere without that. He could only walk 30 steps up and down until he was exhausted. He had doctors, dentists appointments, had to get bloods done, he wouldn’t have been able to do that without them.”

Christine thanked Diane and the entire Red Cross team for providing this invaluable lifeline. Kian also had to be home schooled by his mother while she in turn had to work from home. Christine, who works with the Housing Executive, said her employers have been amazing throughout and really understanding.

It wasn’t just mobility that has been a struggle for the Doherty family over the last few years however.

“It seemed never ending. I am not lying when I say I had to turn into a raving lunatic to get people to take me on. Now it is amazing, his consultant, his psychotherapist, and his physiotherapist, the Education Authority, myself - we have meetings every six to eight weeks linked in with the school and his special needs teacher Ms. Sylvia Lester - she has been amazing and very helpful.

“There is an amazing linked in, multi-disciplinary approach and it has paid off, but that was two years of me constantly contacting, e-mailing, complaining, going private. It was a long road.

“I would say to people don’t give up. It’s an old adage, but no-one knows your children better than you and you know when something is not right.”

During that period the whole family had to adapt and the journey to get where they are today has taken a toll on Kian.

“It was tough but Kian weathers it well. If he was a high maintenance, drama child it would be a different story. He just gets on with it. He does the physio I ask of him; he goes to his appointments; he does schoolwork when I ask him - he gets extensions because they know he has difficulty with the energy and the chronic pain because he is in pain all the time, constant nerve pain.

“He can’t sleep as he has a sleep disorder now because of it, so that impacts him mentally. His GCSEs are now down to five subjects. He also suffers from chronic fatigue if he extends himself too much mentally, for example there have been times when I came in in the evening and he can’t put a sentence together he is so exhausted.

“If he had a shower the night before that is literally all his energy spent for the next 24 hours so we have to be very careful about appointments at hospital, dentist, doctors, even the barbers - I have to make sure it’s not a day at school or that he has to have a piece of work submitted. Even getting ready for school, getting into the chair, out of the chair, into the car, out of the car, going up or down stairs takes up so much energy for Kian.

“There’s a thing chronic sufferers of pain call it - spoonfuls, and you have X amount of spoonfuls of energy per day, so that’s how I look at it, that he has 15 spoonfuls of energy a day. So eight spoonfuls is a shower. Three is getting him downstairs for his breakfast.”

Christine said Kian’s brothers Ryan and Evan have been amazing throughout, with Ryan and his friends recently pushing the petition on social media and the boys helping out in other ways too.

“Evan the youngest - he is like a wee packhorse going up and down the stairs. If he comes down for a drink or a yoghurt he will bring one up for his brother. They know what is happening. We try not to make it their responsibility, but they are great.”

STRENGTH OF CHARACTER

Kian’s own strength of character as well as his amazing family have carried him through. “This has been going on since he was 13 when he should have been going out with his mates, going to birthday parties, the cinema, going into the town. None of that has happened. The reality is his life has changed completely. He has been in a wheelchair since December 2019, he couldn’t walk for two months before that, he couldn’t go to school, see his friends, it’s a nightmare for him. But he is so good and he weathers it well.

“Kian he is a total gamer, he loves maths and sciences. He is quiet but very funny; he is strong but doesn’t know he is and he is just very kind, not demanding at all. The only thing is the pain, he just wants to be pain free. He will literally try everything. He is on medication and they are slowly increasing the doses but he is inconstant nerve pain. Even dressing he is in agony. But he just gets on. He is so determined. He is a wee trooper.”

With diagnosis and the expert support network now in place, Kian is showing some signs of improvement, but Christine knows “there is a long road ahead and this is just the start of it.”

“Neurologically he is much improved, his speech is much better, he can hold a conversation with you - in October 2019 Kian couldn’t string a sentence together. You would ask do you want a drink and he was looking at you he couldn’t say yes or no.”

Part of the reasons why FND - also known as Conversion Disorder - is so difficult to diagnose is because of the array of symptoms which can vary widely in different people, and they do not always manifest themselves in a physical way like some of Kian’s symptoms did and are therefore not always apparent to others.

Christine knows other people close to her who have been diagnosed with different symptoms. “FND is like ASD in the sense that there are a lot of markers but you don’t have to have them all,” Christine said. “Some people like Kian can’t walk, some people are blind, some people lose their hearing, there is so much in it. I don’t know if it is because the process for diagnosing it has become streamlined or there is more awareness but more and more people are getting diagnosed.”

PETITION FOR CHANGE

There are some groups such as FND UK Hope and FND Matters NI which are a lifeline for families like the Dohertys but there remain issues around awareness, research, funding and resourcing which families affected are now trying to get discussed by politicians on the floor of Parliament.

“It would be great to build the momentum to get the petition over the line. Derry has so far voted more than anywhere else in the UK for that petition, and anything we can do to increase that would be great,” Christine said.

**There are currently over 6,000 signators to the petition and at 10,000 government will have to issue a response. When it reaches 100,000 it will be considered for debate in Parliament.

To add your name to the petition, go to petition.parliament.uk/petitions/565418