Thursday 20 June 2019

'My life is in total shutdown' - All Ireland winning musician struck down by brain and spinal conditions

Emma Lacey says her life has been turned upside down in the last six years
Emma Lacey says her life has been turned upside down in the last six years
Amy Molloy

Amy Molloy

A young Tipperary woman battling spinal and brain conditions has told how her life has been "put on hold" for the last six years.

Emma Lacey (23), from Clonmel, went from playing sports and winning All Ireland music competitions to not being able to walk or hold an instrument.

She suffers from Spinal Stenosis, a condition which narrows the spine and has left her wheelchair bound for the last year, and a progressive degenerative disc disease.

When she was just 17 and flying out to volunteer in Africa with Loreto Secondary School in Clonmel, she felt a sharp pain in her right leg.

Emma Lacey underwent brain surgery on Friday
Emma Lacey underwent brain surgery on Friday

The pain eventually went away but when she returned home to Ireland, so too did the agony.

"I never ran again, never walked properly again and never lived a day without chronic pain again," she said.

Doctors and physiotherapists initially thought she had a bulging disc, but during her Leaving Cert year she had to have an emergency operation.

For the last six years, her life has involved countless surgeries and she has had to give up many of the hobbies she loves.

Emma Lacey with Pope Francis in Rome
Emma Lacey with Pope Francis in Rome

"I have no life. Progressive degenerative disc disease and spinal stenosis and five spinal surgeries killed all my dreams, stole the best years of my life."

She was recently diagnosed with a brain malformation which has caused her health to further deteriorate.

"A life of isolation, intractable pain and opioid medication which saw me disappear from the lives of my family and friends became immeasurably worse in February this year when I was diagnosed with a brain malformation," she said.

"The diagnosis of a Chiari Malformation means that my brain is too big for my skull.

"My overflowing brain is being pushed into my spinal canal blocking the flow of cerebrospinal fluid to the brain and the slow agonising paralysis.

"At the moment, I'm bed bound and have to use a walker inside and to go to the toilet. In the last year, I've had to use a wheelchair."

After repeating her Leaving Cert, she went to study Irish and media at the National University of Galway, but despite her best efforts, she had to make the long journey back to Clonmel.

"A piano, banjo, guitar, tin whistle and a flute lie idle around the house. I have gone from playing music and singing non stop, winning All-Ireland titles, living for the Fleadh Cheoil every year, teaching music and performing with the famous Brú Ború group in Cashel to being unable to pick up an instrument," she said.

Following her latest surgery, Emma is hoping to raise enough funds to make her home more accessible by building a downstairs bedroom and wetroom where she can shower.

"A fund will also be put in place to assist in meeting the huge costs involved in future medical care under neurology, orthopaedic and pain management consultants. It will allow me to avail of occupational therapy, physiotherapy, psychology and a range of services and interventions by other health care professionals."

Emma has praised her friends, family and neighbours who, over the years, have held a number of fundraisers to help her battle her conditions.

"Everyone at home has been great and I really appreciate everything they're doing," she said.

You can donate to Emma's fundraiser here.

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