Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where I received care in Alberta, Canada had posters for a heart camp in California on the wall but when I asked my doctor about anything closer, she told me there was nothing. I had essentially given up hope that I would ever have the chance to attend heart camp when I turned 18, shortly after having LCSD and my ICD implanted at the Mayo Clinic in Minnesota. 

However, I knew from following Facebook posts that one of our close heart friends (my heart sister, Michele) had sent her daughter to Camp Heartbeat in Virginia, close to where they live and she had a blast. When I researched the camp, I found out they accepted campers up to age 19. My mom and I then asked Michele if I could stay with her until she dropped both myself and her daughter off at camp since her daughter would also be attending. She told us absolutely, yes and thus the planning began. 

On June 16, I flew out to IAD (Washington-Dulles). Though the journey was far from simple or direct. A missed connection and being stranded in Atlanta, Georgia for hours on my first international flight on my own did not stop me. I stayed with Michele and her family for a week before heart camp. The entire time was filled with priceless adventures and memories I will treasure forever. It was an incredible feeling connecting with a family whose relationship and experiences with LQTS are so similar to my own. They live life and are not bound by fear or apprehension. In fact, they live more because of LQTS just like I do. During the trip, we visited caverns together, toured Washington DC, visited the Smithsonian Museum of Natural History, met their horses and chickens, toured a winery, and caught fireflies (for the very first time for me since we do not have fireflies where I live).

I will remember the way we hysterically laughed as Michele’s husband drove the golf cart down the golf course in the darkness of nightfall in their gated community after we caught the fireflies down by the river forever. The sketchy engine was incredibly noisy and leaked gasoline, so even our hair and skin smelt of gasoline afterward, yet we could not stop smiling and laughing. During our time together, we laughed, cried, and bonded. We immediately felt an incredible sense of connection that only intensified as the week progressed.

From June 22-27, I had my dream of attending heart camp come true at Camp Heartbeat in Virginia. The entire experience could only be summed up as incredible. The unspoken sense of community and connection felt by everyone was incredibly moving, knowing that we all understood more than most others could about the challenges and triumphs of living life with varying heart conditions. Although our heart conditions were different, we face many of the same obstacles. It was priceless to be with others who shared that sense of understanding. Everything was taken care of. I did not have to worry about anything. I got to be a kid for a week and my only major responsibility was getting to my next activity. Seeing the scars and hearing the stories from other kids made me feel so much less alone. I finally wasn’t weird or strange. I was no longer “the girl with the heart condition.” I was just Alexis. I was me. 

Throughout the week, I stepped out of my comfort zone and participated in a variety of fun activities. I ribbon danced. I did yoga. I painted, made bracelets, and made a clay strand of DNA. 

I laughed as we played Apples to Apples and UNO in the game room. We even had a spa night where I got to have my nails done. We sang along to campfire songs well into the dark of night by the lakeside and made s’mores. I also had the opportunity to meet the very first girl my age in person living with LQTS. She also has a pacemaker, while I have a dual chamber ICD/pacemaker which just added to the sense of commonality.

Even when a severe thunderstorm approached with gusts of 60 mph wind and we couldn’t leave our dorms, we didn’t let that stop our fun. As the rain poured outside and the wind howled taking the power out for hours we played UNO in the pitch black, chatted, and watched the storm. Once the storm calmed but the power was still out, we had the opportunity to participate in a doctor talk where we could ask the cardiologists any questions on our mind relating to our heart conditions or health care. The cardiologist emphasized an important point that I passionately believe in, simply put, “Live your life.” In addition, the doctor encouraged us all to take control of our own healthcare and ask any questions we have for our doctors ourselves so that we form a solid understanding of our own conditions.

A standout moment of the week for me was when we had breakout sessions split up according to age where we got to share both the challenges and the positives of living with heart conditions. Despite our heart conditions varying widely and some having electrical conditions and others having structural heart conditions, we shared many of the same difficulties and positive parts that come from our experiences with our conditions in high school. Many of us struggle with missing out on things and always having to catch up in school and life because of our health. However, on the other hand, having heart conditions has helped us to appreciate the little things. It made me less fearful. I live my life now instead of just being alive. I even traveled over 4,000 km from home to be at camp in a different country away from my family. It helps us to focus on what we can do rather than what we cannot. It helps us to realize our own inner strength and to be ourselves. It was also emphasized that we should remember that our goals are our own. They are not anyone else’s. Every day we wake up we are getting closer to our goals, not further away even though it may be slower than we would like. That was a powerful takeaway for me.

Throughout the week, we competed in events earning points for our randomly assigned teams for the Camp Heartbeat Olympics of Team Killer Whales and Team Great White Sharks. I competed in trivial pursuit and helped to make our team flag that was used in the Olympics. There was also a camp talent show that I watched with delight and I enjoyed cheering on the other campers.

I was reminded what a small world we all live in near the end of camp when the electrophysiologists switched off and Michele’s daughter’s pediatric EP came to camp to supervise. When we met, she asked me who my EP was. I told her, and she actually knew my EP well. She used to work in Canada, in the province to the west of me and met my EP at several conferences. She had even stayed in her house. She told me I had to say hi to her, so we took a photo together and sent it to my pediatric EP who promptly emailed me back filled with excitement. It was really neat that the EP looking after my little heart sister in another country thousands of kilometers away knows my own pediatric EP well.

At the end of camp, when all of the parents came each camper was presented with their own custom award. I was presented with the “Oh Canada… Award” for never complaining even when things were tough, being flexible, and being just as nice as you’d expect a Canadian to be. All week I answered random questions about Canada from stereotypes to the capital city, to what stores and fast food restaurants we have. The award fit me perfectly. I am incredibly glad I was able to have this experience. I truly felt as though I belonged and I will carry the memories I gained from this trip with me forever. Heart camp was an experience I did not realize I needed until I was already there. As an advocate in patient communities, I did not realize how truly alone I felt until I was surrounded by people who completely understood what I had been through and am going through. I also gained a second mom and a second family through Michele, which I am also eternally grateful for. The bond we share because of our similar experiences living with LQTS is something that surpasses all words and emotions. Both places felt like a home away from home even though I was so far away. 

If you are a kid or a teen with a SADS condition reading this, consider going to heart camp especially if you are struggling with your condition or feel alone. If you are the parent of a child with a SADS condition, consider sending your child to heart camp. I was safe the entire time. Medications were supervised. There were AEDs on site. There was a medical magnet that could have been used to disable ICDs. There were even device programmers on site that could have read pacemakers, ICDs, and loop recorders. Multiple doctors were at camp around the clock fully equipped to deal with any cardiac emergency. I never felt scared. The experiences I had will help me going forward in dealing with my condition. I am so glad I went when I had the chance.

Would you like to share your family’s experience with a SADS condition?  
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Name: CJ Heil
Age: 20
Which SADS condition do you have? Long QT Syndrome
When were you diagnosed? Oct. 2010
How are you treated? Beta Blocker (Nadolol)

What has been the biggest challenge you’ve faced in living with your diagnosis?
Knowing that even though it’s not visible, I am and always will be different from everyone else

What is one positive thing that has come out of your diagnosis?
I was sent to a camp for kids with heart conditions, Camp Joy. The camp was called Camp Joyful Hearts and I went for 9 years where I’ve met some of my best friends. Now I’m in my 2nd summer as a counselor.

What encouragement or advice would you give someone who has just been diagnosed with your condition?
Hit me up and I’ll be you’re number 1 fan and supporter.  You can find me on Instagram.  
Make sure you don’t waste away life, sitting on the sidelines.  Enjoy life and get out there. 

What does your day-to-day life look like?
I’m a full time college student, who teaches 2-3 CrossFit classes a day, volunteers 5 hours a week at the children’s hospital oncology department in Louisville, plays club soccer, and is involved in a fraternity. 

What are your favorite hobbies and activities?
I love to workout/ do CrossFit, play soccer, volunteer, thrifting, going on random adventures in the woods or city, and anything coffee or tea related.

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Back in 2016, I came across this special camp for kids with heart disease called Camp Taylor in Modesto, California.  You see, I was in the midst of trying to digest the fact that my daughter had this thing called Long QT Syndrome and CPVT (yep—both) and that she had almost died.  I was looking on the SADS website when I finally could go to it without crying and found a link about children’s heart camps.  This is how I found Camp Taylor which is a camp that provides free medically supervised residential camps for kids living with heart disease.  I checked out their website and honestly it looked pretty cheesy to me, but I needed a break.  I was so exhausted after taking Sofia to her physical and speech therapy appointments as well as her cardiology, neurology, and psychology appointments.  Battling with her to take her beta blockers every morning and her asking me through tears “why me” almost every day was my life.  So, I signed her up and crossed my fingers they’d take her since it would only be 3 months since her cardiac arrest.  I mean, when I applied, she couldn’t even remember what she ate for breakfast much less which drawer her shirts were in.  At least they had a camp cardiologist and cardiac nurse practitioner on-site for the duration of camp as well as one nurse (usually a CVICU nurse) for each group of 8 kids.  She’d be safe and maybe I could finally get some much-needed rest.  Thankfully, they accepted Sofia.  I would soon realize how deeply grateful I would be for Camp Taylor.

Camp Taylor changed Sofia.  The child I picked up now took her pills like a champ because her cabin-mate (a heart transplant recipient) could take “HUGE” pills with “NO WATER MOM!”  But even more important, Sofia no longer felt alone.  She found her tribe.  She was surrounded by kids who had scars on their chest.  They didn’t stare at each other because they pretty much look the same, but also they know what it feels like to be stared at.  They have dedicated time to talk and journal about her hopes and fears.  During Heart Education, not only did they get to learn more about their heart disease, they learned about their cabin mates’ heart disease.  Many of the camp counselors also have heart disease which means the counselors truly understand what the campers are going through.  The counselors also serve perhaps a more important purpose.  That is to remind the campers that they too can live and thrive in spite of heart disease.  I was not prepared for the tears that streamed down my face when I picked Sofia up from camp.  Tears of gratitude that I found this camp and tears of sorrow that I had to find this camp.  As soon as we left, she was asking when she could return.

“You always have a place here.” 

If you are reading this blog and your child has heart disease, please consider finding a heart camp to send your child to.  There are not too many and, while some require your child be a patient of a particular hospital, others do not.  Camp Taylor does not.  They have welcomed campers as far away as Texas.  If you have questions about Camp Taylor, please e-mail me at shawnaesq@gmail.com.

About Shawna:  Shawna is a heart mom from California who is a married mom of two spirited daughters—Sofia, 11 and Gabby, 6.

Camp Odayin is a Minnesota based nonprofit providing fun, safe and supportive camp experiences for young people with heart disease and their families.   We offer parents a worry free opportunity to send their child to camp in a medically safe environment.  Our programs include:

• Family Camp – located in Amery, WI (near Minneapolis/St. Paul) and Camp Lake WI (near Milwaukee/Chicago).  Our fall Family Camp program unites parents, grandparents, kids with heart disease and siblings to have fun, learn, share and connect over their common bonds.  Make Family Camp a tradition for your family!  It’s a wonderful weekend to get introduced to the Camp Odayin mission and staff.  Tons of fun, parent education opportunities, private family housing options, relationship building with heart families, including your own.
• Residential Camp – located in Crosslake, Minnesota (central Minnesota) and Elkhorn, WI (near Milwaukee/Chicago). Campers in grades 1-11 come from all over the United States for a week of memories and kindred friendships.  Campers enjoy horseback riding, archery, nature, arts and crafts, kayaking, tubing, stand-up paddle boarding and more.
• Winter Camp – located in Amery, WI (near Minneapolis/St. Paul). Our 3-day February weekend is packed with snow tubing, broomball and crafts for campers in grades 1-12.
• Day Camp – located in St. Paul, MN.  Our week-long, full day, day camp program gives our youngest campers the opportunity to explore nature, enjoy themed activities and introduced to the Camp Odayin family.  This camp is for campers in grades K-3.

All of our camp programs are staffed by volunteers, many of whom have cardiovascular disease themselves. Over 125 individuals donate a week of their lives to support our summer camp programs each year. During each session of Residential Camp, at least two pediatric cardiologists are onsite at all times. Cabin groups of 6-8 campers are cared for by a cabin nurse and two counselors. Cabin nurses monitor the health of each camper, distribute medications, and provide emergency responses as needed. Every volunteer receives training prior to the start of camp, which includes information about pediatric cardiac conditions, childhood development, policies and procedures, and appropriate responses to various situations. Following camp, when asked if their child was medically safe at Camp Odayin, 98% of parents surveyed indicated ‘strongly agree’ and the remaining 2% marked ‘agree’.

Some words from our participants:

“I feel like I have a new family and my camp friends are my brothers.”

“My daughter had an amazing time last week and can’t stop talking about camp. The first thing she said was, ‘sign me up for winter camp, family camp, or anything Camp Odayin offers’. She really connected with the other campers and enjoyed the variety of fun activities.”

“I want to say a HUGE thank you for an amazing weekend! This was our first Family Camp and we are so excited to make it an annual event! It was great to connect with other families, spend time together, just relax and have fun. Everything was so well organized and made the entire weekend stress free for the families… We love Camp Odayin!”

All of our camps are offered to our families for a minimal $25 fee.

To learn more about Camp Odayin and all of our programs here: www.campodayin.org.  Contact info@campdayin.org to be added to the mailing list.