Running your first marathon while raising money for the SADS Foundation is no easy feat; neither is figuring out how to tell your 9-year-old she has Brugada Syndrome, so Camila “Mila” did something inventive. She used the marathon as a vehicle to tell her daughter, Sarah, about her diagnosis, “You have this condition that a lot of people don’t know about and this was a good way to let people know and help them.”Mila didn’t want Sarah to feel she had a condition that would inhibit her or make her feel different, afterall, Sarah only had one symptom: chest pain.
Mila describes Sarah as a normal, energetic 9-year-old at the time of diagnosis. She loved being a volleyball player on her elementary school team and enjoyed anime and art; an influence from Mila’s background in design. When Sarah began to complain of chest pain, Mila remembered Sarah’s great uncles on her dad’s side passed away tragically at just 19 and 21 years old. One had a fatal cardiac arrest during a soccer game. The other went drinking after hearing the devastating news of his brother’s passing, but he didn’t typically drink and he too passed that day. This memory coupled with Sarah’s chest pain hurled Mila into action.
A pediatrician was their first stop, but Mila was told Sarah was okay. Mila pushed on and took Sarah to a cardiologist who ran an EKG and blood test. The results were normal, but Mila said the doctor didn’t know much about it and Sarah was still complaining of chest pain. Mila took her to a larger hospital where the doctor conducted another EKG, but set it up in a different way revealing a suspicion of Brugada Syndrome. Next, a sodium channel ajmaline test resulted in a positive outcome for Brugada Syndrome. Lastly, a genetic test confirmed Sarah had the genetic marker for the condition.
Mila said they were devastated, “Knowing a child can suddenly pass from that condition was really scary for me and my family. It was very challenging to explain it to Sarah being a small child. I would wake up with nightmares and it took a toll on my mental health. It’s such an unknown disease. Most of the population has no idea what it is and it (cardiac arrest) can happen any time.”
An internet search introduced Mila to SADS. Throughout the journey, SADS Family Support Director, Genevie, was a source of support and guidance helping Mila find a specialty doctor in Japan where they live. Mila says, “I was then motivated to run the marathon and donate proceeds to SADS. Running that much and that long was something I never thought about doing. It was a motivation.” Mila described the experience as a positive way to raise awareness and money for SADS. She discovered that many people got involved after she had several discussions in the community.
Mila says having resources means she’s not alone, “I think the hardest part as a parent or patient is you fall into fear. I liked getting knowledge and support, making me feel like it wasn’t the end of the world.” Mila says it’s important for parents to know what Brugada Syndrome is and how they can protect their children and/or themselves, but also more immediate details like you can rent an AED until you get your own.
Awareness is at the top of Mila’s list. She’d like more people to know the difference between a heart attack and cardiac arrest. She wants more CPR and AED awareness. She says parents shouldn’t struggle to find doctors who know about SADS and who can provide information about living with a condition.
Today, Sarah is a healthy and happy 13-year-old. She sees a specialist every four months and gets an EKG. Mila completed the marathon and donated the funds to SADS saying, “I hope the money will help research and people in need.”