Brianna’s memory lives on with race to highlight rare condition

HORSE enthusiasts from all over the country have rallied to support a race in memory of a young Killaloe girl with special needs who touched the lives of countless people.

In November 2019, Brianna Lynch (9) died in her sleep from SUDEP, Sudden Unexpected Death in Epilepsy, leaving her family devastated.

Her mother, Arabella Scanlan, a well-known Killaloe horse trainer, has organised the Brianna Lynch Memorial Cup for any rider aged 18 or under as part of the North Tipperary Foxhounds Point-to-Point, which is the last race on Sunday, February 19 at Lisboney, Nenagh at 1pm.

Depending on numbers, the race may be split in two for riders aged 14 and under and for those aged 14 to 18. Entries opened last weekend on Plain Sailing for the third year of this competition.

Numerous spot prizes have been donated by local businesses, friends, horse racing enthusiasts and people who only met Brianna once.

Stephanie Cunningham travels from Cork for the race and every year donates €50, having met Brianna on one occasion.

Arabella said people that Brianna has touched during her life are just incredible.

“This race is creating huge public awareness for SUDEP. It is not a limiting condition, people can achieve anything but have a harder battle to do it.

“Kids are going to come and have a great day and remember Brianna. It is a day they will remember for the rest of their lives. Money being raised is going back to the kids to have fun,” she said.

Arabella recalled Brianna was on 14 different types of medication before her family found one that suited her due to the lack of an ambulatory EEG until a fundraising campaign resulted in the provision of this vital piece of equipment in University Hospital Limerick (UHL) a few years ago.

Describing this as a “game changer”, Arabella said when this was applied to Brianna they discovered what was causing the issue in her brain and they could then match this with the right type of medication to deal with her Epilepsy.

“We knew Brianna’s brain was very complex. When Brianna died, her consultant Dr Elizabeth O’Mahoney asked how would we feel about donating her brain for medical research, to which we said ‘absolutely’.

“If it helped one other child or one adult, it would be great. It provided physical evidence that Brianna died from SUDEP. I remember asking the paramedic what had happened and he said ‘I think she died from SUDEP’. I didn’t know what it was at the time.

“I think once you are aware of something and are educated about it, you can learn to cope and deal with it. I felt it was a double whammy. Not only had I lost my daughter, I had lost her to something I had not even heard of.”

When money was collected from the first race, Arabella wanted funds to remain in the North Tipperary region and to start a research programme into SUDEP, which was started.

This coincided with the findings from Brianna’s brain, which had never been part of Arabella’s plan, as it was just the way things happened.

Brianna is now on the first ever Irish register of SUDEP deaths. Funding also came in from other sources, which the Medical Journal will publish in the near future. It is expected that this will outline the number of SUDEP deaths in Ireland.

Money was also raised which helped Epilepsy Ireland (EI) community resource officer, Veronica Bon to provide information for newly-diagnosed Epilepsy patients.

While people with Epilepsy are at a higher risk of getting SUDEP, Arabella pointed out there are a number of ways to lower this risk.

This includes not to get over tired, take medication as prescribed and get them changed with the help of a neurologist if they are not working, avoid excess alcohol and be aware of SUDEP.

Last October, Brianna’s story was used to promote World SUDEP Awareness Day.

Ali O’Brien (14) Tullaheady, Nenagh, who has Epilepsy, was thrilled to win the Brianna Lynch Memorial Cup last year.

Her mother, Laura, contacted Arabella to praise her for raising public awareness about SUDEP on social media, as this provided her with the necessary information to reduce the risk of this condition for her own daughter.

Ali will participate in the 2023 race and is still pursuing her dream to be a jockey.

Arabella smiles when she thinks of Brianna because she brought so much joy to her family, everyone who met her and those who didn’t.

“People from Canada, New Zealand and all over the world keep in touch via social media. I met Debbi Reasoner from Nebraska in Connemara last year on World SUDEP Day, we got chatting and she had donated directly to Epilepsy Ireland to acknowledge the race.

“People who never met Brianna are still donating to Epilepsy Ireland. Brianna melted everyone. She challenged everything from her care, the hospital system, Autism, Epilepsy and clinical guidelines. She challenged everything that tried to challenge her in her own way.

“For me to do something small is an acknowledge to one of the superheroes that braced this world. Brianna took a bucket full of 14 tablets in the morning and evening, had so many complications and never complained,” she said.

Every August, Mullagh Show, which has donated €50 towards the race, runs the Brianna Lynch Memorial Cup for the My Little Pony Class.

Arabella brings rosettes and the Mullagh Show presents a plate for the winner, which is judged by family members.

Brianna loved Mullagh Show, which was the second last show she attended before she died.