Summer memories remind me of the power of community

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by Jasmine Ramos |

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As another hot summer gets underway, I’ve been reflecting on two pivotal events that took place a year ago this month. These memories elicit feelings of joy whenever I’m feeling down in life with SMA.

On June 11, 2023, my summer kicked off with a bang. My best friend, Jessica, and I had arranged to attend an Ed Sheeran concert together at MetLife Stadium in New Jersey. She took a train from New York City while my mom drove me from Pennsylvania in our wheelchair-accessible vehicle. What a day it was!

Two women, both seated in power wheelchairs, smile for a photo from their seats at MetLife Stadium. In the background, a large stage is lit up with crowds of people surrounding it.

From left, Jessica Tambor and Jasmine Ramos pose in front of the sold-out MetLife Stadium in June 2023. (Courtesy of Jasmine Ramos)

My mom isn’t a big Sheeran fan, so she gave her concert ticket to my sister and said it would be an excellent chance for us to make some memories. I thought it was a fantastic idea, and my sister was superhyped. It would be our first concert together, which was even more awesome.

We got to the hotel I’d booked months earlier, knowing my mom wouldn’t want to drive back home later that night. Jessica, who uses a tracheostomy and ventilator like me, reminded me to charge my batteries for the long night ahead. I was more than prepared.

I was ecstatic when we finally reached the arena. After saying goodbye to our mom, my sister and I dashed inside, where we caught the last few performances of R&B singer Khalid, the opening act. Then, after two years, I was finally reunited with my best friend, who was thrilled to see me.

Being amid a crowd of more than 80,000 Sheeran fans was an exhilarating experience. One of the highlights was watching the sold-out stadium light up with everyone’s phone lights at sunset. Although my all-time favorite memory is still my first Justin Bieber concert, this one was a close second, mainly because I got to share it with two special people.

The excitement continues

Two weeks after the concert, my family and I attended our first Cure SMA conference at Disney World, in Orlando, Florida. Given the challenges of flying with a wheelchair and other medical equipment, we opted to travel by Amtrak, which was much safer for me, albeit a long and exhausting journey.

Arriving at the most magical place on earth and checking in alongside hundreds of other conference attendees felt surreal. Many people approached me to say hello, and several recognized me from social media, exchanging enthusiastic greetings. For once, I felt that I was among my people and exactly where I belonged.

During our four-day trip, we balanced attending conference workshops with exploring the parks. We caught a parade at the Magic Kingdom and watched the spectacular fireworks show. It was an unforgettable experience that made me emotional, since it was my first time at the park.

Epcot was included in our conference package, making it the second park we visited. I was particularly excited about this outing, as I love immersing myself in different cultures. Because of the heat, Mom and I couldn’t stay for long, but my favorite moments were visiting the butterfly garden with my niece and taking the ferry rides there and back.

The conference was an incredible experience, bringing together individuals and families affected by SMA worldwide. I had the opportunity to attend informative workshops, listen to inspiring speakers, and connect with others who truly understood the challenges and triumphs of living with this condition.

As the conference ended, I felt a mix of emotions: sadness at leaving behind my newfound friends and the magic of Disney, but also a renewed sense of hope and determination. The memories I made during those four days will stay with me forever, serving as a source of strength and inspiration in the face of any challenges that may come my way.

In moments of stress or grief, I find solace in these cherished memories, reminding me that life can be beautiful again. The Sheeran concert and the SMA conference at Disney World were testaments to the power of friendship, family, and community, showing me that despite adversity, there’s always room for joy and unforgettable moments.

A group of eight people, all wearing Mickey Mouse ears, gather for a photo in front of a large Cure SMA sign.

Jasmine and her family stand in front of a Cure SMA sign at the 2023 conference. (Courtesy of Jasmine Ramos)

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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