Heart Felt Appreciation

Last night, I held the $500 gift card from the Myotonic Dystrophy Foundation in my hands, filled with overwhelming gratitude and an indescribable sense of relief. It meant the world to me that they recognized my story about how Myotonic Dystrophy has profoundly impacted my family’s life in countless ways. This incredibly generous gift card has been such a rare and incredible blessing to our small family, offering us crucial support right when we needed it most and helping us breathe a little easier in the process. Even the simplest things, like grabbing a soda or candy bar at a gas station, are luxuries that so many people take for granted without thinking twice. For us, however, spending $5 or $6 often feels like it cuts into our carefully managed budget for essentials like diapers or dish soap, making even minor purchases a decision we can’t take lightly. I’ll admit, I also used to overlook those seemingly small things too—things that used to feel inconsequential—but not anymore, not after all the challenges we’ve faced and the hurdles we’ve had to overcome.

This experience has deeply reminded me that what may seem small or insignificant to one person can genuinely be life-changing for someone else. Truly, this gift card is more than just a simple gesture—it feels like a miracle, and words cannot fully express just how much it has meant to us and how deeply it has impacted our lives during this difficult chapter.

With this gift card, I was able to finally tackle some pressing expenses that had been weighing heavily on my mind for weeks. I put a portion of it toward our overdue electric bill, which helped ease a huge source of stress and anxiety for me. I also used it to purchase a few much-needed items for Zayden—critical tools to assist with his muscle and nerve stimulation, bulk cleaning supplies we were running dangerously low on, and several long-postponed items from my Amazon cart that I had been waiting endlessly to afford. Zayden got brand-new socks to replace his old ones, which had become far too small and uncomfortable, and I was even able to replace the broken remote for his lift chair—an essential piece of equipment his care team relies on daily to help him. Additionally, I purchased “peanut chairs” to support his core strength and balance, along with an air purifier, extra filters, and calming aromatherapy scents to help improve his breathing. A small yet powerful window fan now circulates air more effectively near his crib, which has made a noticeable difference, and I can’t even describe the immense relief of stocking up on three extra cases of diapers—an absolute essential, especially with hurricane season upon us. Moreover, I was finally able to buy items we’d been struggling to go without for months: a basic yet functional flip phone, bath supplies, laundry detergent, dish soap, sponges, trash bags, and other key cleaning essentials we use daily. With some of the remaining balance, I even managed to get Zayden a few teething toys, which have been a lifesaver in helping soothe him and keep him comfortable. Every single item felt like a small victory, adding up to a huge difference in our day-to-day lives.

This gift card didn’t just allow me to buy what we needed most desperately—it also gave me the chance to redirect funds I’d originally budgeted for these items toward repairing our vehicle, something we’ve been in dire need of addressing for far too long. The $500 didn’t just help us cover essentials—it allowed us to meet these needs so much faster and with a far greater sense of peace of mind. I can’t overstate how truly grateful I am for this support during such incredibly challenging times.

Beyond the tangible, practical benefits, this thoughtful gift card brought something even more valuable: hope and a renewed sense of belonging to a supportive community. It reminded me that amidst the daily struggles and uncertainties we face, there are still people and organizations out there who care deeply about families like ours and are willing to extend a helping hand. The Myotonic Dystrophy Foundation’s extraordinary generosity not only lightened our financial burden but also gave me the emotional strength and encouragement to keep pushing forward, no matter what. It’s easy to feel isolated, overwhelmed, and unseen when navigating the challenges of a rare disease, but this incredible act of kindness reminded me that we are not alone in this journey. Knowing that someone believes in our story and genuinely wants to help has reignited a spark of optimism for the future and given me the motivation to keep striving for a better tomorrow.