RARE Insights

Covid-19 bringing communities together

9/4/2020

Each of us is being asked every day to manifest strength beyond what we are accustomed to. Use this as an opportunity to stretch your potential, if not for yourself then for the people who are depending on you
Cristy Balcells

“Each of us is being asked every day to manifest strength beyond what we are accustomed to. Use this as an opportunity to stretch your potential, if not for yourself then for the people who are depending on you,” encourages yoga instructor Cristy Balcells to a group of international families who are simultaneously taking a deep breath while holding a warrior pose. The participants are parents, caregivers and individuals affected by the rare mitochondrial disorder Barth syndrome, and the class is “Online Corona Yoga: Stay Calm and Strong”.

When Barth Syndrome Foundation (BSF) started to see the domino effect of school closings and warnings related to the coronavirus in early March, they knew that their families would need additional support. “Our community was already isolated, already at risk for life-threatening complications related to illness; they are part of the vulnerable group that everyone is talking about. During this pandemic, we know our role is to not only provide information, but also to provide support,” says Shelley Bowen, BSF’s Director of Family Services.

During this pandemic, we know our role is to not only provide information, but also to provide support
Shelley Bowen, Director of Family Services

Cristy is not only a certified yoga instructor but also a parent of a child with a rare mitochondrial disease so she understands the fear and anxiety felt by this community. A nurse and former executive director of a rare disease nonprofit, Cristy wanted to help families cope by offering a daily online yoga class open to anyone. Within the first week, over a dozen families were gathering via Zoom daily from around the globe to do yoga together, many of them for the first time.

I am so thankful for this class. I never thought I would be doing yoga. It frees my mind from worry and stress, and I feel for a little while immersed in love, light and wellness.
Allana Anderson - Parent

“I am so thankful for this class. I never thought I would be doing yoga. It frees my mind from worry and stress, and I feel for a little while immersed in love, light and wellness. It’s one time of the day I don’t feel guilty or like I’m not doing enough, and I love seeing the other families as well, reminding me I’m not alone,” shares Allanna Anderson, a mom from Scotland whose son has Barth syndrome. After class a dozen faces fill the screen, sharing experiences from the US, UK, Netherlands, Belgium, Scotland and Canada. One mom breaks down into tears. “This is so hard on our kids. It’s just not fair. It was already hard for them, and now they are afraid they will get this virus and die. We are scared, and we haven’t been able to go out for weeks.”

Research from Harvard Medical School suggests that yoga is one positive way to cope with the anxiety and uncertainty many people are feeling as a result of the COVID-19 pandemic. “Yoga is a very grounding experience. In this case mindfulness means being focused on the way you feel in your body in the moment. Learning to breathe through a difficult posture and not give up is a very valuable lesson we can apply off the mat in our lives right now.” The community experience is also important she emphasizes. “This is not about being flexible or being really good at certain poses. It’s about connection, to yourself and to others.”

Netherlands resident Peter van Loo lives with Barth syndrome and consequently fatigues quickly and experiences debilitating muscle weakness, common features of the disease. Nonetheless, he also participates in the yoga class. “I feel I may find an in-person class once this is over. I’m really surprised at how intense and strong yoga is. But I really enjoyed it and will keep doing more.” Like most people, Peter is staying home in order to avoid any exposure to the coronavirus. “This just shows what BSF is all about. Not only are they doing the research to advance therapies for Barth syndrome, but they are making sure we are never alone.” In addition to “Corona Yoga”, BSF is also offering a daily age-focused support group, a weekly community roundtable, as well as virtual happy hours for adults and show and tell sessions for kids.

This just shows what BSF is all about. Not only are they doing the research to advance therapies for Barth syndrome, but they are making sure we are never alone.
Peter van Loo