Helen and Brona Kearney

October 9, 2007 
Living with Friedreich’s Ataxia  
By Nathacha Appanah 
 
Friedreich’s Ataxia is a genetic and progressive
disorder of the central nervous system where the
general symptoms are clumsiness, difficulties with
balance, lack of coordination and in time, a slurring
of speech. 
 
‘When Helen was 12, she started having back pain and
consulted an orthopaedic surgeon for scoliosis. He
recommended two 6-hour operations. In between these
back operations, I feared something else would be
wrong with Helen but the orthopaedic consultant
dismissed my concerns,’ recalls Mary Kearney, Helen
and Brona’s mother. 

Eight months after surgery, Helen developed severe
pain in her left shoulder. A physiotherapist said she
had a problem with her joints. ‘I could see that Helen
had trouble with her coordination, so in June 2002 I
took her to a neurologist who diagnosed Friedreich’s
Ataxia. I was very upset and remember trying to be
optimistic and telling Helen that she probably
wouldn’t need a wheelchair until she was 40,’ says
Mary Kearney.

But Helen realized that she would probably need one
long before that. ‘I was just a teenager but I knew it
was serious and it felt bad. It put worries about
pimples and growing pains into sharp perspective,’
says the 18-year-old Helen. 

Because of the genetic factor, Mary knew that her two
other children, John and Brona, were at risk and they
were tested the summer after Helen’s diagnosis. Brona
was found positive and John negative. 

‘I was surprised because my balance had always seemed
better than Helen’s at that time. I wasn’t that upset
because I didn’t really realise what it meant. It
really sunk in about two years later and I was very
down then,’ remembers Brona, now aged 15.

Mary is a working mum and Euro-Ataxia’s secretary
since 2004. After their daughters’ diagnosis, she and
her husband Michael did consider reducing their
workload. ‘It was important that my children didn’t
think their disability would mean changes for me. 

Michael asked Brona and Helen what they thought of his
idea to give up work and their immediate reaction was,
"But who would pay for our horse-riding?" So we
maintained our jobs and tried to keep things as they
were before,’ says Mary. 

The two girls lead as normal a life as possible. Helen
finds it difficult to walk when tired or in the dark
but can mount her white pony Robin without any
assistance. 

Her riding teacher said of her that she has become ‘a
leading performer for her age in dressage and
show-jumping.’ Brona found that horse-riding was a
little harder after her back surgery but she thinks
that keeping active is essential for Friedreich’s
Ataxia sufferers. 

‘My main interests would be in the hunting, endurance
riding, trekking and sometimes cross country. School
is OK because I am able to walk around the place with
everyone else. The only hard part is that I am not
able to play sports with them because I am not as fast
or active as everyone else,’ declares Brona. 

Helen always talks about her disease through Robin,
her white pony: ‘I don’t worry about suffering a
deadly tumble. I’m not going to live my life in fear
of falling off my horse. Robin is gentle and even if I
fall off, he never gallops away. He minds me.’