A life less ordinary
'I am Jenny, I am not dystonia." That's the comment from Jenny McCann (26) from Tallaght who lives with the debilitating disease. Jenny communicates through a special voice-recorded computer, describing what life has been like locked away in her own personal hell for the past 13 years.
Dystonia is a condition of the brain stem, and it causes muscles to go into painful, involuntary spasms and shakes.
Up until the age of 13 Jenny had been a lively girl, a keen Irish dancer, and was looking forward to starting secondary school and a bright future. But all that was taken from her when she was diagnosed with the disease, and faced life in a wheelchair.
Jenny lives with her mum, Carol (52), in their renovated home in Tallaght. She also shares her downstairs bedroom and bathroom with her brother Stephen (28), who is also confined to a wheelchair and has learning difficulties.
Caring for Jenny and Stephen is a full-time job for single parent Carol, who depends on home help to get a break.
"I have a girl who comes here from the Irish Wheelchair Association, and I have help one day a week which gives me time to go out to Unislim or sometimes the Arch Club with Stephen."
Carol thinks back to the time she first noticed something was not right with Jenny.
"Jenny woke up one morning and had stiffness in her body. I thought, wrongly, that she had meningitis. She couldn't walk or swallow and she was in pain all over her body."
It took two months of harrowing waiting before Jenny's condition was finally diagnosed.
"Up until the diagnosis I couldn't even give her any medication. She was left in pain all the time. It was horrific," says Carol.
Jenny was admitted to Our Lady's Hospital for Sick Children in Crumlin. "We were next to the oncology ward, and the parents there were saying it was terrible because they could hear Jenny's screams."
The life-shattering news finally came. "We had a brilliant doctor who was determined to get to the bottom of Jenny's condition. He was very confident he would get the answers." Carol adds: "When we got the diagnosis, it was a relief because we could start different medication that would help Jenny." Carol subsequently found out the condition is hereditary. Jenny was put on a course of muscle relaxants and a type of valium, which eased the pain.
"Jenny still has pain," says her mum. "Sometimes her body will go into spasms. The day she got her first symptoms was the day Jenny's whole life changed," adds Carol. "My daughter went from being a very active girl to not being able to communicate and that, for her, was the most frustrating thing.
"At the time Jenny had been attending school, but had to leave to go to hospital. She stayed five months there. Then she spent a year rehabilitating, getting used to the fact that she was now a wheelchair user. She got help with her speech and swallowing. She continued her education."
Carol adds: "At that stage Jenny was tube-fed, but before she
left hospital she was feeding normally. She can now drink out of her special cup and nobody has to feed her." The thing that keeps Carol going is that she laughs a lot with her daughter. "We try to live our lives as normally as possible," she says.
Jenny is now attending college part-time and studying a computer course at Pearse College. She is also engaged to Richard, who has special needs. They met in school.
Five years back Jenny wrote a book called Sunshine And Rain, which was published through the school and has been republished by Dystonia Ireland.
"It's about how Jenny's life changed and about when she was young. It is a very upbeat book to read as a parent," says Carol. Jenny also spent some time doing work experience on the Tallaght Echo newspaper.
Carol and Jenny have also competed each year in this paper's Mini Marathon, and Jenny took part in the Irish Physically Challenged Games in the New York some time ago.
Carol was a former child carer and she now helps run local special needs groups. "Stephen is happy as long as he is outside and meeting people," she adds.
"I do worry about the future and if something happened to me, what would happen to Jenny and Stephen? Who would look after them?"