Anne Neville with her daughter Meggie Fitzgerald who has narcolepsy.
A Tipperary mother who “lost her beautiful daughter” after she developed a chronic neurological condition is calling on the Government to put measures in place to allow her 21-year-old move through life without further constraints.
Roscrea’s Meggie Fitzgerald is one of approximately 100 young Irish people who have been diagnosed with narcolepsy - a condition characterised by excessive daytime sleepiness, disturbed night time sleep, vivid nightmares and hallucinations, sleep paralysis (a feeling of being conscious but unable to move) and a sudden loss of muscle tone known as cataplexy - in the aftermath of receiving the 2009/2010 H1N1 swine flu vaccine Pandemrix.
Meggie and her mother Anne Neville are members of SOUND (Sufferers of Unique Narcolepsy Disorder), a campaign group set up by parents of children who have developed narcolepsy. The registered charity provides support for 87 Irish families who were diagnosed with the chronic condition after receiving the vaccine. SOUND wants the State to provide a pathway for the children and young adults with narcolepsy to move through life without each having to be assessed on an individual basis for supports they require.
Anne has slammed the Government for delaying putting in place a national narcolepsy service at St. James Hospital in Dublin. “The Government is at fault for Meggie’s condition. I lost my beautiful daughter to a disease when we thought we were doing good by protecting the nation from a virus that could kill people,” Anne, who is a family support worker, tells The Nationalist.
“A and E, doctors, consultants - nobody knew anything about narcolepsy. Nobody put an amber light on narcolepsy and they still haven't. We are still getting re-diagnoses in the group every month. Funding is supposedly agreed for a centre of excellence to open but there has been no mention of that since last year,” Anne underlines.
Anne says Meggie’s health hit rock bottom after receiving the vaccine in December 2009. “Since Meggie had the H1N1 swine flu vaccine she is allergic to all medication. We have tried her on different medications but she keeps having reaction after reaction. There was a time we thought she was dead after a reaction but it turned out she was having a cataplexy attack. The HSE didn’t bring us in and say ‘this is what can happen your daughter’.
“We had a meeting with Minister for Health Simon Harris last year and Meggie attended along with another young girl with narcolepsy and members of the SOUND committee. A video of a girl having a cataplexy attack was shown to Simon Harris and he nearly got sick,” Anne claims.
An outgoing teenage Meggie abruptly began to shelter herself away from society after the vaccine. “Meggie was a pure tomboy before she got the swine flu vaccine. She loved all sports, very academic, full of life, never ill - the only time she got sick was in September when she went back to school.
“Immediately after the vaccine she stopped playing sports. The first sign of ill health was when she got a bladder problem. We brought her to a specialist in Dublin and she was eventually diagnosed with giggle syndrome, but she wasn’t very happy with the diagnosis. She continued to be sick and tired and was crying so I brought her to our GP on numerous occasions with infection after infection. He tried to say she had depression, which I didn't agree with because she wasn't depressed when her father died.
“We went on holidays after her Junior Certificate to France and her mouth broke out in woeful cold sores.When we came home I brought her back to the GP and she ended up in Cork University Hospital for three weeks because the GP thought she was after getting a tropical disease, but again nothing came up.
“She still continued to get sick and was missing school - her fantastic record for attendance had diminished. She didn’t partake in anything the whole of transition year. She went on overseas trips and I had to get teachers to mind her because they knew she wasn't herself,” Anne continues.
Since Meggie was diagnosed with narcolepsy with cataplexy in January 2014 after having a multiple sleep latency test at the Mater Private Hospital in Dublin, Anne has had to fight “tooth and nail” to ensure her daughter gets through education.
“For the whole of sixth year the Department of Education allocated Meggie ten hours resource, but she only went to Presentation Thurles two days a week. I had a teacher come into the house at 11 o'clock in the morning, and they put a bed in the chapel at school for her so she could have a nap during religion class. Another teacher would come in the evening. We had to fight tooth and nail to get this,” Anne admits.
Meggie is studying Law at NUI Galway and is dreaming of becoming a solicitor, but Anne is worried about what the future holds for her daughter.
“We are continually trialling her on different drugs. There is a new antihistamine coming out and hopefully she will trial that in the summer when she is finished college. She is very lucky with college for the simple reason that most of her lectures are in the afternoons. The HSE has supported all of us with medical cards, given the older sufferers disability payment and supported some with college. Meggie has to get private accomodation to be close to the college and the Government has helped with that.
“The State are paying the shortfall for her to see specialists in the Mater Private, but we don't know the implications for the rest of Meggie’s life. Who is going to employ her? She may need to have a nap in the afternoons. She is doing her utmost to be a solicitor and is working very very hard, but she can't turn around and tell the judge in court ‘sorry, I have to leave this case now - I’m tired’. How do you tell a young woman ‘you may never get a job’? Driving is another obstacle for her too,” Anne highlights.
Meggie’s health continues to take its toll. In addition to the prominent symptoms of narcolepsy with cataplexy, she had to get her tonsils removed, suffers from irritable bowel syndrome, low mood and has a host of other complications. “Everyone looks at her when she comes home to see what her mood is. If she is exhausted we are in for a dogs life or if she is good we have our Meggie back.
“Her mood is constantly up and down, and she is prone to picking up infections. She can go on a night out but it takes her two days to recover. When she is down she curls up in a ball, you don't talk to her, she will argue about things that could be 100 percent wrong, she will end up going away crying and she will come back later saying ‘I’m so sorry mammy, it’s not me - I’d never say that’. When she gets overly tired you just put your head down and work with it.
“One night we were all sitting together at the table having dinner. She started to feel a bit funny and started to go blind. She couldn’t get up from the table - her whole body had given away. She had a bad reaction to medication and had a cataplexy attack. We had to lift her into the ambulance. It was terrifying,” Anne recalls.
Anne is very proud of Meggie for battling narcolepsy with cataplexy. “She has learnt to manage it. She knows when she has to go to bed and when she needs an hour’s rest. There was one time when we could be out, I would turn around and she was asleep beside me. She is able to manage it now, but if she gets sick she isn't able to manage it.
“I am so so proud of her. I would sell everything I have for her to get to do what she wants to do because she has overcome such adversity and I really mean that,” Anne adds.