Know the Signs, Fight for Victory

Sweet Relief

Guest writer Mazzy Sass is a junior at Schreiber High School in Port Washington, NY (also the home of The Marfan Foundation). Mazzy has Ectopia Lentis Syndrome, which is a Marfan-related disorder.

In March of 2021, I was getting ready to head to Johns Hopkins in Baltimore to meet the incredible Dr. Paul Sponseller for a spinal fusion. I’d been living with scoliosis for most of my life, and I’d tried everything to avoid this day – bracing, Schroth therapy, even a bit of praying. But none of that worked, or at best, just delayed the inevitable. I was so scared about what was coming, but deep down, part of me was secretly excited to have this surgery — it meant I could finally ditch that brace I’d been wearing every single day for seven years. As a high school girl, a back brace just didn’t fit in with my life.

I don’t remember much from the moments after my spinal fusion surgery. I woke up all groggy with a growling stomach, and I couldn’t find anything to eat that appealed to me. My parents tried their best to convince me to have a meal, but I wasn’t having it. Then, I glanced around my hospital room, which was my home for the week, and saw this towering display from Dylan’s Candy Bar and a bunch of boxes from Baked by Melissa. Let me tell you, it was a sight that brought a faint smile to my face and a whole lot of comfort. As exhausted as I was, I knew I had to explore this sweet situation.

Looking back on it now, I can clearly remember indulging in an entire box of Baked by Melissa cupcakes as my first post-surgery meal. I can’t even begin to express how grateful I was to have such a fantastic assortment waiting for me. But here’s the thing: I had no idea who sent me this wonderful gift. Who was kind enough to send me this incredible treat?

It wasn’t until later that I found out it was the Sydney Lerman Pediatric Hospitality Program behind this act of kindness. This program is beyond amazing, and it’s named after Sydney Lerman, a truly special and inspirational woman who’s been through more than a dozen surgeries herself. She knows firsthand how a gift that brings a smile can make all the difference. Together with her sister Carly, Sydney founded this program with a mission to offer support and spread joy to kids going through surgeries and procedures related to Marfan syndrome. This extraordinary foundation gives kids from all over the place a delightful surprise, adding a touch of sweetness to their lives.

I want to say a big thank you to the Sydney Lerman Pediatric Hospitality Program for everything they did for me and the countless others who have been touched by their incredible generosity and support. You’ve made a tough time a whole lot sweeter, and I’ll forever be grateful for that.

A volunteer-run effort supported by the Foundation, the Sydney Lerman Pediatric Hospitality Program brings a smile to the faces of children facing surgery by providing care packages. If you know a child with Marfan, Loeys-Dietz, or VEDS who is having surgery, you can arrange for a care package to be delivered. For more information or to make a donation, click here.

Young white woman with long brown hair smiles alongside a silver balloon

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