01 Oct 2022

Fund set up to aid brave South East woman (23) battling rare brain and spinal conditions

Fund set up to aid brave Clonmel woman Emma Lacey battling rare brain and spinal conditions

Emma Lacey with her pet Dougal.

A 23-year-old Clonmel woman's life is in shutdown due to rare brain and spinal conditions.

After enduring multiple spinal operations over the last six years, Emma Lacey was also diagnosed with a serious brain condition in February.

Emma, a ferocious competitor on the field  for Moyle Rovers, a member of Clonmel Rugby Club, Hillview and Clonmel Rowing Club and an award winning Brú Ború musician  prior to her illness, is set to undergo brain surgery for a condition known as a chiari malformation.

The surgery will be carried out to try and relieve pressure on her swollen brain and halt a progressive deterioration in function. 

The brain is too large to fit into the skull and is being pushed into her spinal canal blocking the normal flow of cerebrospinal fluid,  causing excruciating pain and mobility issues.

"I had a normal hectic life playing football, camogie, tennis, rugby and enjoying  playing music  with my friends, going to Fleadh Cheoils and teaching the  tin whistle. All of that came to an abrupt end at seventeen and I have lost the best years of my life. I want to get some of my life back" said Emma who is living with chronic pain after having five spinal surgeries in the last six years.

A disabling degenerative disc disease at three levels of her spine  and a progressive disease called spinal stenosis have cruelly taken the best years of her life.

In February a life of isolation, intractable pain, increasing opioid medication and disability took another devastating turn for the worst when she was diagnosed with a serious brain condition.

Following the brain surgery, which is taking place on August 24th, Emma is also facing a  sixth operation on her spine because the spinal stenosis has moved up another level in her back  before she attends the National Rehabilitation Hospital in Dun Laoghaire.

Friends are coming together to raise funds to support Emma and her family to provide a downstairs extension for an urgently needed bedroom and shower facility. It will also provide assistance with on going medical costs under orthopaedic, neurosurgery and pain and management consultants  and the provision of a range of professional services such as occupational therapy, physiotherapy and psychology during  the long journey of rehabilitation ahead for the former Rathkeevin, Powerstown and Loreto student.  

People who would like to donate to the Emma Lacey Trust can do so on GoFundMe

Emma with her parents Eamon and Joan.

A number of events are planned over the next few months including a Clonmel Band Aid on Sunday, September 9th in Gleesons, a 5k fun run/walk will be held in Powerstown Park, Clonmel on Sunday, September 16th and on Friday 28th September a gala concert will be held in Monroe at the Moyle Rovers GAA grounds.

At 17 years of age a busy life was suddenly brought to a standstill for Emma, a daughter of Eamon and Joan and sister to Sinead and Brian. Emma, from Beechwood Close in Clonmel, experienced pain for the first time on a flight to Africa on her way to volunteer in a children's hospital and orphanage. She realised it was serious when she pulled up running around Powerstown Park with a pain down her leg on her return home. She never ran or walked properly since and an active  sporting life with  Moyle Rovers, Hillview, Clonmel Rugby Club and Clonmel Rowing club came to an abrupt end.

She was diagnosed with degenerative disc disease at three levels of her spine and underwent her first operation in May  of 2012 and was unable to sit her Leaving Certificate at the Loreto as a result. She returned the following September but required another operation in February after the disc prolapsed but somehow managed to do the Leaving Cert later that year despite missing huge chunks of the school year.

Her condition continued to deteriorate making life very difficult for her as she attempted to attend Galway University studying Irish and media .

Emma was then diagnosed with progressive spinal stenosis before a spinal fusion operation was carried out on two levels of her spine in October 2015. Spinal stenosis is a narrowing of the spaces within your spine, putting  pressure on the nerves which normally occurs in people over sixty so the level of stenosis and how aggressive it is is very rare for her age. Following the operation  Emma never walked without the assistance of two crutches and mobility gradually deteriorated further over the next  few years.

Increasing levels of pain, opioid medication and worsening mobility issues forced Emma to leave her studies at Galway University who were very supportive of Emma's struggle to remain in college.

Emma became seriously ill last summer when admitted to Galway University Hospital. After being discharged Emma moved to a downstairs room and since then has required a walker to get around the house and uses a  wheelchair on the rare occasions she goes outside. Emma collapsed at home in February and was diagnosed with the chiari malformation brain condition at South Tipperary General Hospital.

The most recent scans have also shown a deterioration in the spine with the stenosis moving up a level of the spine and  a further operation is required which will take place following the brain surgery.

Details of up coming fundraising events can be found on Facebook.

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