Fundraiser for Mayo musician following a life-altering SPS diagnosis

A GoFundMe page has been set up on behalf of Mayo musician Brenda Grealis who has been diagnosed with PERM Stiff Person Syndrome (SPS).

Progressive encephalomyelitis with rigidity and myoclonus (PERM), is a more severe variant of Stiff Person Syndrome, which is a rare and serious neurological condition.

It affects the brain and spinal cord causing severe muscle stiffness, painful spasms and increasing loss of mobility and function. Unfortunately, because this illness is so rare, treatment options are limited, ongoing and challenging.

Many people in Mayo will know Brenda Grealis as a gifted singer, harpist, pianist, flautist and guitarist.

She has spent her life bringing comfort and joy to others through her music.

Brenda has performed at various events across the country marking people’s most meaningful moments with extraordinary sensitivity and grace.

Brenda also entertained guests at Ashford Castle where her music helped create unforgettable experiences for visitors from all over the world.

Music was not only Brenda’s career and source of income, but it was also one of the great loves of her life and losing the ability to sing and play has been one of the most heartbreaking impacts of her illness.

Stiff Person Syndrome became widely known when Celine Dion publicly shared her own diagnosis explaining how SPS forced her to stop performing due to muscle rigidity and uncontrollable spasms.

While each person’s experience with SPS is different, Celine’s story has helped raise awareness of how profoundly this illness can affect a person’s body, independence and career.

Unfortunately, Brenda’s form of the illness is a rarer and more aggressive variant, with even greater challenges.

In recent weeks, Brenda’s condition has deteriorated rapidly, requiring admission to intensive care, which has resulted in a prolonged stay in hospital.

Despite multiple treatments and infusions, she has not responded and now faces complex, lifelong medical needs.

She requires a motorised wheelchair, ongoing rehabilitation, specialist neurological care and support for her long-term care needs.

Brenda’s home will need to be adapted to meet these new physical challenges and allow her to return home to her family.

At the heart of everything is Brenda’s deep love for her family. Being a wife and mother of four is central to her life and her family have always been the greatest source of pride, strength and joy.

This diagnosis has affected not only Brenda but her husband and children who are doing everything they can to support her through this unimaginable time.

As her condition progresses, her family will continue to face emotional and financial strain, navigating long term care needs, major life adjustments and the sudden loss of income, all the while ensuring Brenda is surrounded by love and stability.

The GoFundMe fundraiser is intended to help ease the financial burden on Brenda and her family as they face ongoing challenges.

Any donation, no matter the amount, is deeply appreciated and sharing the page is just as meaningful.

Brenda’s family have expressed their heartfelt thanks to everyone who has offered support.

“The kindness shown by people near and far has meant more to us than words can say”, her husband said.

“Every message, prayer, donation and share has helped us feel supported and has given us strength during an incredibly difficult time”.

To donate to Brenda’s GoFundMe appeal, you can visit here.

You can also visit the GoFundMe website and search for the Brenda Grealis Fundraiser.