Brianna’s legacy highlights dangers of rare condition

A HORSE race held in memory of a young Killaloe girl with special needs, who touched the lives of countless people, has shone a much needed spotlight on a life-threatening condition.

There was a great buzz of excitement at the second Brianna Lynch Memorial Cup, which was the last race on the North Tipperary Foxhounds Point-to-Point at Lisboney, Nenagh recently.

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

Her mother, Arabella Scanlan has used this memorial race to highlight the risks associated with SUDEP.

SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.

Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy, although estimates vary. It is the leading cause of death in people with uncontrolled seizures.

Epilepsy – which affects 40,000 people across the country – is one of the most common neurological conditions in Ireland today while across the globe, there are approximately 50 million people living with epilepsy.

Born with numerous physical and developmental challenges, including Epilepsy and cardiac abnormalities, Brianna was a popular figure in the local hunt field.

Brianna came third in one of the classes on a four year-old filly at Mullagh Show in August 2019.

Charlie, an award-winning great Dane, who died in 2016, had developed an extraordinary protective bond with Brianna.

His life-saving exploits were featured in national and international media after the Clare Champion first revealed how he could detect when Brianna was going to have an epileptic fit about 20 minutes before each episode.

Arabella recalled she “touched the world being the most magical little person”.

The first two dates for the Nenagh Point-to-Point incorporating Brianna Lynch Junior Member’s Race were cancelled due to poor weather.

This year, Arabella decided not to seek financial donations for charity from people many of whom are in financial difficulties due to Covid-19 restrictions.

Instead, she gave the donations to all of the 18 young riders and concentrating on raising public awareness about the risks posed by SUDEP, which has made a huge difference.

“All the young riders had a great day. We raised more public awareness about SUDEP by having a good fun day instead of having collection buckets everywhere.

“It blew my expectations out of the water. All the young riders in the race had fun and got off their horse beaming. There were a few kids from different hunts that paid a day membership to participate.”

“One young rider from Laois was passing by the weigh room when a photographer was taking a photograph of three other riders who invited him into the picture.

“That boy said to his father two days later ‘I had the best day ever dad and the best thing was they included me in their gang for the photograph’. That is where friendships for life are made.

“Everyone who attended said it was the best day ever. When an event gets cancelled once you are lucky to get a second date, no one gets a third date. The fact we were given a third date was incredible.

“I am blown away by the amount of people Brianna touched in her short life. She is my hero and I am so privileged that all these young aspiring jockeys come together every year to celebrate their friend.”

She thanked everyone who had helped make the Nenagh Point-to-Point races happen.

A number of prominent figures fom the racing world including trainers Enda Bolger, Dermot Weld and Fergal O’Brien and leading television pundit Kevin Blake posted messages on Facebook, wishing all the young riders the best of luck in the race.

Arabella didn’t get Brianna’s autopsy report until eight months after she died.

“I had never heard of Sudden Adult Death related to Epilepsy,” said Arabella.

“Anyone can die from SUDEP, it is an electrical misfire in the brain. Very little is known about it. It wasn’t a seizure, it was a case of brain arrhythmia where her brain misfired.

“It wasn’t a heart attack. We would never have found out this information if we hadn’t donated her brain for research.

“I didn’t know SUDEP existed. Brianna died from it. I remember turning to the paramedic after Brianna died and asking him what had happened.

“He said ‘I think it was SUDEP’”.

“I asked him what is SUDEP and he said you better talk to your neurologist who felt it was unlikely because SUDEP is so rare,” she recalled.

Having donated Brianna’s brain for medical research in Cork, doctors found her brain had unplugged her heart before she died.

“Brianna wouldn’t have known what was happening. I knew when I found her, it is like as if she was asleep. I felt we needed to create public awareness about SUDEP because people don’t know it exists.”

“I gave Epilepsy my best shot with Brianna because I knew what I needed to know. I didn’t with SUDEP because I didn’t know it existed.”

Half of the money raised from the 2020 Brianna Lynch Memorial Cup was sent to Epilepsy Ireland on the basis it would be spent in on providing education programmes for schools and families in the North Tipperary area.

This has provided funding for an Epilepsy Ireland representative to visit St Mary’s Secondary School, Nenagh.

Ali O’Brien, who won the Brianna Lynch Memorial Cup, in spite of her Epilepsy, is a student there and she explained to the teachers and students what to do when someone is having a seizure.

It also covered the cost of an Epilepsy Ireland representative visiting Ali’s family and explaining the condition to her parents and other family members.

SUDEP is now included in public information programmes about Epilepsy and is now on the training curriculum for medical staff in hospitals.

Arabella decided to specify North Tipperary to benefit from the Memorial Cup donation because the event is held in this area and most of the donations came from people in this district.

The other half was donated for a research programme into SUDEP.

Arabella said when information from Brianna’s brain was added to the SUDEP research programme it emerged a lot of people are dying from SUDEP and not seizures.

“There is a major national programme ongoing into SUDEP, which is fantastic.

“Anyone who has Epilepsy needs to know about SUDEP because they have a far higher risk of dying from it. Once a person with Epilepsy knows SUDEP is there, they can take measures to lower this risk.”

“This includes taking their medication, not taking alcohol or drugs, and getting a proper sleep. There can be side effects from taking medication from Epilepsy. If an Epilepsy patient doesn’t feel well, they should not stop their medication and should instead consult their GP or neurologist.

“For Brianna, we went through about 16 different medications for Epilepsy before we found the right one that suited her. It is trial and error, particularly with children. Children are growing all the time, their weight is increasing, so their blood has to be constantly monitored.”