Celebrating my daughter’s birthday while raising awareness for NMOSD

Making memories at the Sumaira Foundation's 6th Annual Gala in Boston

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by Candice Galvan |

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A 15th birthday is a special event for a teenager. Whether you have a big celebration with lots of friends and family, or a small gathering with loved ones and furry friends, having the opportunity to celebrate another trip around the sun is memorable and fun.

In my Mexican culture, turning 15 is a right of passage and an entrance into womanhood for girls. Typically, there’s a big party called a “quinceañera,” where the birthday girl dresses up and celebrates.

My youngest daughter, Bella, who was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) when she was 9, recently turned 15. But instead of having a big quinceañera party, she chose to celebrate her birthday in style by attending the Sumaira Foundation’s 6th Annual Gala on April 22 at the Newbury Hotel in Boston.

The gala was a few days after Bella’s birthday, so the celebration lasted for days. Bella, my oldest daughter, Estrella, and I left for Boston early in the morning after Bella’s birthday. Because we attended last year’s awareness gala, Bella and I knew which places we wanted to visit and which restaurants we wanted to try. For me, the most important thing was to have fun and make memories while bonding with my daughters in Boston.

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A noble cause

We spent the day of the gala relaxing in preparation for our evening of fun and dancing. I practiced my hair and makeup skills on Bella. She was easy and had no expectations for her gala look, which I was thankful for, especially coming from a picky teenager!

After a few hours, Bella looked like royalty with curls, fresh baby’s breath in her hair, and even jewels around her eyes. She chose a blue and pink iridescent dress with sparkles, saying it reminded her of a scene from Disney’s “Sleeping Beauty.”

The setup for the gala was enchanting, whimsical, elegant, and incredibly beautiful. Estrella and I took advantage of the 360-degree photo booth before an audience began to congregate. Photographers snapped photos to document the evening, and a live band performed pop hits, which kept everyone on the dance floor.

The goal of the event was to raise $375,000 to further NMOSD awareness and research. Gala guests included patients, caregivers, physicians, medical students, researchers, friends, family, and even co-workers of those affected by NMOSD. The event was held ahead of the American Academy of Neurology’s 75th Annual Meeting from April 22 to 27.

The star of the gala was host Sumaira Ahmed, founder of The Sumaira Foundation. She wore two dresses over the course of the evening and floated around like a sparkling angel. The event concluded with Sumaira personally thanking each guest for attending.

While the whole night was memorable, it was especially surreal to be in the same room with other NMOSD patients and caregivers. Everyone understands the beauty and challenges we’ve encountered on our journey. It was like being at a family reunion. For one night, we were able to forget the stress of NMOSD.

In addition, it was very moving to connect with top NMOSD specialists in person. Hearing about the progress being made in terms of new treatments and quicker diagnoses means everything to our community.

Bella’s night ended with a big thank-you to me and some late-night Chinese food with her older sister. My night ended with rest and a grateful heart for all of the work being done to raise awareness about NMOSD. Without the dedication, support, and commitment from specialists, researchers, and foundations like Sumaira’s, the NMOSD world would look much different.

Note: Neuromyelitis News 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 providers 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 Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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