Healing Through Music
Sarina Haggarty’s Story
Written by: Temo Primrose Gare // Photos provided by Sarina Haggarty
One summer day in 2017, Sarina Haggarty was standing on stage in a small bar located in east London. There were about 30 people in the audience who watched her as she performed. She was in the middle of her four-song performance, and had just completed the third song and starting the last one. Then, she felt it. The feeling she called an aura. When she got it, she knew what will follow next. "So it's kind of a feeling going into a seizure. It's impossible to describe. It's not a pain. It's… like an uncomfortable feeling," she says.
Sarina knew that she had a few minutes before her seizure came. She had to make a choice - either stay on stage and finish her performance, risking the possibility of having a seizure in front of the audience, or cutting her performance short and finding a private space to go into before she had the seizure. She chose to perform. Luckily, she was able to finish her performance when she hurriedly went off stage to find her mom and had a seizure about three minutes later in the backstage. This is life as Sarina knows it. She is a performing artist with a blossoming music career but also suffers from epilepsy - a neurological disorder that affects the brain. Seizures are the most common symptoms of epilepsy.
By the time she was 17, Sarina had experienced and accomplished what a lot of people hadn't in their lifetime. She had got two invasive brain surgeries, became a Make-A-Wish ambassador, released her first album and performed in front of almost 22 thousand people at a Shawn Mendes concert. She is now 19 years old and says she is not done yet. She recently released her second album in January 2018 and said she doesn't see her epilepsy as a challenge to her music career. She sees it as something that makes her different because it makes her story a lot more interesting.
Sarina recalls the first time she had a seizure. It was in 2008 and she was nine years old. She had got a headache all day in school, and her school nurse gave her some Tylenol. Later that afternoon, she was in the car with her mother who had just picked her up from school. The last thing she remembers is looking out the window. Her mother, Marsha Haggarty, on the other hand witnessed it all. "She was non-responsive, just sitting there. I couldn't get her to talk or anything... We ended up calling 911." she recalls. Sarina woke up six hours later and was told she had a seizure.
It wasn't until the second seizure months later that Sarina underwent more tests and was diagnosed with Epilepsy. According to Epilepsy Canada, 0.6 percent of the Canadian population has epilepsy. Their statistics also revealed that the major type of treatment is long-term drug therapy. If all medications fail, brain surgery will be the next option, but only if the seizures are coming from one part of the brain that can be safely removed without causing other major brain-related issues for the patient, such as immobility, language and memory loss.
Sarina’s neurologist Dr. Andrea Adrande said that 80 percent of epilepsy cases are treated with medication, and the remaining 20% do not respond to it. Sarina was part of the 20 percent. She underwent three different drug treatments to control her epilepsy and she wasn’t responsive to any of them. After being on medications since the age of nine, she was informed at 15 years-old that since none of the medications worked for her, that the next best step was the surgery.
Sarina’s seizures were coming from the temporal lobe - a part of the brain that is mainly responsible for receiving sounds and speech. There are different types of epilepsy. Sarina’s diagnosis is called Cortical Dysplasia. Dr. Adrande says this is the most common cause of epilepsy in children. In simplest terms, this means that the small area of the cortex of the brain failed to develop properly. Usually, when the baby is in the womb, the neurons that live inside of the inner part of the fetus’ brain as the brain develops, travel to form the outer layers. Instead of these neurons getting more mature and developing their own specific functions that they are going to carry on years later in life, they stop developing. “So, when a cortical dysplasia happens, a group of neurons either fail to travel to the outer part and they just stay immature in the inner part of the brain, or they travel to the outer part and fail to mature,” Dr. Adrande explained. These neurons have abnormal electrical activity and tend to produce seizures.
The news that surgery seemed to be the only option left to treat her epilepsy came as a shock to Sarina. She was scared. “I was thinking, ‘What? No! I can’t do that! Like, oh my goodness, that’s so scary!’” Her parents chose to leave the decision on whether to have surgery or not, to Sarina. Although they were leaving the decision-making in her hands, they still had family conversations to ensure that she understood the complexities and risks associated with brain surgeries by discussing both the pros and cons with her, especially the possibilities of having to re-learn everything. “There is a chance you might not be able to walk when this is done, there is a chance that you might learn how to speak again, there is a chance you’re going to lose your music,” Marsha says, recalling one of the conversations she had with Sarina.
Sarina wasn't the only person worried about this. As a parent, Marsha said she and her husband, Larry, were extremely worried for their child. "I used to just sit in my car and just tried to think about it, or at night you lay awake worrying about it. The things that could [happen]." At 16, Sarina decided that she wanted to go for surgery. The process that followed suit was for her to undergo pre-surgery tests to determine which piece of her brain was going to be removed. Dr. Adrande and her team started thoroughly investigating Sarina’s brain and presenting the surgery process to her and her parents.
Dr. Adrande explained that any person who is a candidate for epilepsy surgery would have to have a magnetic resonance imaging, commonly known as MRI, as well as the video-electroencephalography (EEG), to link the seizures on the video-EEG with what has been identified in the picture of the brain. “Once we understand where the seizures are originating from, we also have to make sure that in the vicinity areas of the brain, there is nothing important. For example, language area or motor area. That if we remove that, it isn’t going to cause a defect” Dr. Adrande states. They also had to do psychological evaluations to understand where the language and memory were located. Once they were done with all of that, then the neurosurgeon got the report and the plan took effect.
Sarina's tests results showed that her cortical dysplasia was very close to her language area. Undergoing the surgery posed a risk that she could lose her speech. Sarina accepted this risk and remained decided that she wanted to go through with the surgery. If Sarina lost her ability to speak or sing, her mother decided to create memories. She was hoping for the best but preparing for the worst.
The first thing Marsha did was approach a local music producer, Ryner Stoetzer, to record Sarina singing. This was possibly the last singing memory of Sarina’s to be captured. The stakes were high for Ryner, and the pressure was on. “It was a heavy responsibility to get it right first of all, because if she had come out of the operation without the ability to continue to sing, then this would have been the only record of her singing at that full potential… It was compelling for me to make sure that we get it right. It was compelling for me to make sure that we get it done properly, and in time.” So, they recorded a song together, titled ‘Distraction.’
Marsha’s next step was applying to Make-A-Wish Foundation with a referral by Dr. Adrande, for Sarina to be considered as a Make-A-Wish kid. Sarina met the three criteria required in order to be granted a wish through Make-A-Wish. She was between the ages of 3 and 17, had a critical illness diagnosed by her doctor and had never been granted a wish by another wish-granting organization. As long as a child meets these requirements, they will qualify and will make it into the list. Because she met the requirements, Sarina made it into the list, but she didn’t know that. Her family decided to wait until the right time to tell her.
According to Erin Bhatia, manager of special events at the foundation and Sarina’s assigned wish-granter, The Make-A-Wish Foundation of Southwestern Ontario granted 65 wishes in 2016, 82 in 2017 and currently have 160 kids on the list, waiting for their wishes to be granted. “We provide something for them to look forward to while they’re in the hospital and going through surgeries and procedures - a positive outlook and something for them to look forward to wishing for, and having it come true,” she says.
Memory after memory, Marsha kept creating and documenting each of them as the surgery date came close. She was collecting memories, while Sarina was counting down the months, then weeks, then days, to her surgeries. She arranged for Sarina to meet with Lennon and Maisy Stella from the television show, ‘Nashville'. They even got to sing a song together backstage after their show in Toronto. Marsha also organized Sarina's memory party where all of her friends and extended family were invited. They had a cake in the shape of a brain that Sarina got to cut. "They were meaningful so that if something did happen, we would have all these things to look back at, and to refer to as well."
The first surgery day came, July 11, 2016. This was the first of the two surgeries Sarina would have within 10 days. The first procedure entailed the surgeon opening up her head and putting the graph in her temporal lobe. The purpose of the graph was to map out where the seizures were coming from, and where the language was located since they were close to each other. Sarina just needed to have a seizure so that they could confirm that her seizures weren't too close to her language area. "They confirmed that my language is no longer to be found. It was off somewhere. Then they could remove that one little piece."
Ten days later, Sarina was back on the operating table. This time it was to remove the brain lesion. A piece, probably the size of an almond, but happens to have affected most of her life more than anything else she has had to deal with. "And it's crazy what the brain does because they remove a piece the size of an almond, but I’m still having bad seizures. Just because of a little piece,” she says. The worst that Sarina and her family were bracing themselves for didn’t happen. When Sarina woke up from her surgery, she still had her speech. Everyone was relieved.
While still in her hospital bed, days after her second surgery, Sarina received the news that her family had been keeping as a secret from her. She was going to be granted a wish by the Make-A-Wish Foundation of Southwestern Ontario. Erin would work with her in order to make sure that her wish was made possible. Sarina’s dream was to be an opening act for a major recording artist. Over the course of the next few months, Erin and Marsha hatched a plan to make Sarina’s dream a reality. They didn’t get the opening act gig for Sarina, but they got her an opportunity to perform a song during the Shawn Mendes concert. This was a huge deal for both the Make-A-Wish Foundation of Southwestern Ontario and Sarina. The concert was at the Quicken Loans Arena in Cleveland, a multimedia venue with a capacity of almost 22 thousand people.
Sarina finally got her wish. She was standing on stage, in August of 2017, a little over a year after her surgeries. Shawn introduced her on stage. She chuckled at the fact that Shawn knew who she was and remembered her name. She was ready. She performed her song, ‘Distraction.’ The song she recorded before her surgeries. The song that could have been the very last she would ever sing, would her language been affected by the surgeries. This was a surreal moment for Sarina. “It was kinda one time shot. That was my chance to go up there and not mess up. I was proud of myself that I did well."
This could have been a happy ending for Sarina, except, her surgeries were not successful. She started having auras shortly after the surgeries. "I thought maybe my brain was moving around which could be normal. But then I had my first big seizure, so I had to go straight to the hospital. So ever since then, I'd have auras and more shaky seizures." She is now looking into having another surgery. She meets regularly with her neurosurgeon to go through the process which she’s very familiar with. She will learn about the expected outcomes and the possible risks of the surgery. She doesn’t have all the details yet, but she has been given a rough idea of what’s most likely to happen on the next surgery. “They’re gonna open my head and they’re gonna look at my temporal lobe and then they’re gonna wake me up, and kind of poke on my brain and make me do vocabulary tests and everything. And then, they’ll know what pieces they can remove and what pieces they can’t. And then, they’ll put me back to sleep, and they’ll remove it.”
Sarina is leading two paths at the same time. The one of a patient with epilepsy and the other of a rising superstar with a promising music career. She gives both paths equal attention. She is now back in the studio, writing and recording new music. She won the Award of Perseverance at Mother Teresa Catholic Secondary School in 2017. She was also nominated for the Jack Richardson fan-favourite award in April 2018, and she performed at one of London’s biggest music festivals this summer, the Trackside Music Festival. For Sarina, life goes on. She is optimistic about the future.
"You know when you have those perfect feelings? Like everything - the world just seems perfect? So hopefully one day I'll have that feeling again."
About the author
Temo Primrose is a graduate of the Master of Media in Journalism program at Western University. She has worked as a reporter and media host for media organizations such as Rogers TV, CHRY FM, CTV and CJBK. She is also the inaugural recipient of the prestigious Raveena Aulakh Memorial Award in Journalism. She has strong interest in human-interest and civil rights stories.