Help Lily Survive with Myasthenia Gravis

Story

Help Lily Survive & Rebuild Her Life with Myasthenia Gravis, a Rare Autoimmune Neuromuscular Disease Hello friends and kind souls, My name is Mariana, and I’m one of Lily’s closest friends and neighbors. I’m sharing this because I see every day how hard she fights and how much this disease has taken from her. Lily is a strong, proud, independent woman who would never normally ask for help like this, and I finally convinced her that she can’t keep going alone. After months of tests and visits to various specialists—while feeling ill, weak, and often unable to see properly—Lily finally got a diagnosis: seronegative myasthenia gravis (SNMG). Before that, she kept pushing through, thinking it was just a lingering flu. She kept hoping it would pass, trying to keep going with interviews and life as usual—until her body just couldn’t do it anymore. She thought that once she finally had a diagnosis, she’d start feeling better. But even with the treatment she’s on now, she’s not feeling better. She’s still in the trial-and-error phase—trying to find the right balance and figure out what works for her body. She’s still coming to terms with this new diagnosis, and she’s learning every day about how to live with it and what it means for her future. She’s always been driven and determined, but I see firsthand how even the smallest tasks take so much energy. Even now, when she can, she’s still trying to figure out how to feel like herself again and to make a living once she is well enough to even function normally.  What daily life looks like for her now: ✅ She has vision issues and balance issues—her vision blurs and she often feels dizzy, making it hard to walk or even stand up. ✅ Getting up, brushing her teeth, remembering to take her meds, and maybe eating is all she can manage most days. ✅ Lily can’t stand up for long, and even sitting upright can be too much. She is in constant pain and discomfort.  ✅ Her speech is slurred and stuttering, and it’s hard for her to be understood. ✅ Her arms and legs shake, feel numb, and disconnected. ✅ Her head and neck feel too heavy to hold up, and she often feels dizzy, faint, and nauseous. She has all-over body pain that doesn’t go away. ✅ She’s very sensitive to light and heat, and the smallest exertion can set her back. ✅ She has shakes and tremors she tries to hide and her energy is very low. She feels feverish at random times of the day and feels cold.  ✅ We’re also watching for signs of a myasthenic crisis, a dangerous worsening of symptoms that needs urgent help and can be life-threatening. This past weekend, she had trouble breathing and felt feverish. We had to monitor her closely. That’s why she has to be careful not to get an infection.  Some days, she has a bit more energy, but those hours are rare and don’t last long. Most days, she’s at home, lying on the couch, feeling too dizzy and weak to do anything at all. Typing is hard. Speaking is hard. Even writing an email takes her hours because she can’t see very well and her body and fingers won’t cooperate—she has to take frequent breaks. This is devastating for her, as she’s always been on the go.  ⚠️One morning, she thought she could manage some chores, but halfway up the stairs she called out to me—too weak and dizzy to keep going. I found her there, shaky and pale, tears in her eyes. “I thought I could do it by myself. Things I used to do, I can’t anymore,” she said, voice trembling. It broke my heart. Moments like that come out of nowhere, forcing her to pace herself and conserve energy carefully. Even a simple trip to the store can leave her dizzy and trembling, so she relies on deliveries most days. She tries to shop and cook when she’s able—about once a week—but it leavesher in even more pain than usual. She has to manage her energy carefully.  Lily is still fiercely advocating for herself, but it takes a heavy toll—so I help by joining her at appointments and offering support wherever I can. I was also the one who convinced her to start this GoFundMe—she was so embarrassed to ask for help. Just like I gently pushed her to get a shower chair and consider a mobility scooter when she’s ready. She’s so proud and independent by nature, but this disease is making it impossible for her to keep going alone.  ‼️Why Your Support Matters Your donations help Lily: ✅ Cover rent, groceries, and medical costs—giving her the space to focus on daily survival and symptom management. Once she gets the right treatment protocol and goes into remission, she can resume a modified life. Hopefully.  ✅ Maintain and expand essential mobility and accessibility tools—like a shower chair, grabbers, home adjustments, UV blockers for her light sensitivity, lumbar and neck support, and eventually a mobility scooter for short trips when she’s ready. ✅ Keep up with daily costs and debts that build up while she’s too sick to work. ✅ Feel a little safer and stop feeling like she’s going to be homeless When I ask her how her day was, she’ll tell me, “I got up, brushed my teeth, and that’s it—I was too weak to eat. I had no energy for anything else.” That’s what “stability” looks like for her right now: surviving, not living. Lily is a hardworking, high-energy, driven person at heart—she’s always been the one helping others. But right now, she needs help herself. Your support allows her to keep going safely and with **dignity** and **independence**, as she works with her doctors to find the treatment that will give her back some independence and ease her daily struggles. ⚠️ How You Can Help ✅ Donate: Every little bit helps—no matter how small. ✅ Share: Sharing this page helps Lily feel seen and supported. ✅ Send Kindness: Even a kind word means the world. Thank you for standing with Lily. Your support—whether it’s a donation, a share, or a kind word—means everything. ❤️ Mariana To contact Lily directly, follow her on  Instagram: @mytimelessway How to Donate (Quick & Easy Steps!) No account creation required. ✅ Click the “Donate now” button on this page. ✅ Type in the amount you want to give. ✅ Only enter your name and email (if you want a receipt — no account is required). ✅ Want to stay private? Just check the box that says “Don’t show my name publicly.” ✅ Choose your payment method (credit/debit card or Apple Pay). ✅ Click “Donate now” — and you’re done! ⸻ You’ll get a receipt by email if you entered one. You may be prompted to create an account after donating — but this is completely optional. You can unsubscribe from updates at any time. ⸻ Thank you so much for your support and kindness. Every bit helps Lily keep going. ⸻ Disclaimer: This fundraiser is not considered income or self-employment. All donations go directly toward essential medical and living costs while Lily is unable to work due to illness. She is still navigating this new diagnosis and searching for the right treatment to reach remission. To find out more about SNMG, here’s a brief explanation and a link: myasthenia.org  https://myasthenia.org/understanding-mg/seronegative-mg-resource-center/#section5 What is Myasthenia Gravis, or MG? A rare neuromuscular, autoimmune disorder. Causes extreme fatigue and profound muscle weakness. Impulses from the brain travel down nerves but are blocked by antibodies before impulses reach muscle. The body is essentially attacking itself and stopping muscle function. Can impact a person’s ability to see, swallow, smile, walk, breathe, or engage in normal, everyday activity. First documented by an Oxford, England physician named Thomas Willis in 1672. What are myasthenia gravis symptoms? Drooping eyelids Double vision Trouble smiling Trouble breathing or swallowing Extremely weak arms, hands, or legs Profound tiredness Impeded mobility and movement SNMG is a rare autoimmune disease that attacks the communication point between the nerves and the muscles—called the neuromuscular junction. Normally, nerves tell muscles what to do using chemical messengers. In SNMG, the immune system disrupts this connection, causing the messages to get lost or blocked.  ✅ This leads to: • Muscle weakness (the main symptom) • Fatigue (muscles tire quickly and recover slowly) • Difficulty with daily tasks (like brushing teeth, washing hair, holding a phone) • Vision problems (blurry or double vision) • Balance issues and dizziness • Speech difficulties (slurring or stuttering) • Swallowing difficulties • Breathing difficulties The weakness usually gets worse with activity and improves with rest. For a concise and reliable overview of myasthenia gravis (MG), the Myasthenia Gravis Foundation of America (MGFA) offers a comprehensive resource titled “7 Things to Know About MG.” This guide is tailored for patients, caregivers, and families, providing essential information about the condition.  Key Highlights from the Guide:  1. MG is a chronic autoimmune neuromuscular disorder: It affects the communication between nerves and muscles, leading to muscle weakness.  2. Symptoms can vary: Common symptoms include drooping eyelids, double vision, difficulty swallowing, and generalized muscle weakness.   3. Diagnosis can be challenging: MG is often misdiagnosed due to its rarity and the variability of symptoms.  4. Treatment options are available: While there’s no cure, treatments like medications, therapies, and sometimes surgery can help manage symptoms.  5. Importance of rest: Symptoms often worsen with activity and improve with rest. 6. Regular monitoring is crucial: Ongoing medical care is essential to adjust treatments and manage the condition effectively.  7. Support is available: Connecting with support groups and resources can provide emotional and practical assistance.  These resources are excellent starting points for understanding MG and navigating the journey ahead. June is Myasthenia Gravis Awareness Month. Please help spread awareness and find a cure. Share and donate now.