<div>My name is Annesley Clark, and my partner, Christine, and I are reaching out for help as we navigate the journey of my rare, life-limiting illness. In 2023, after almost 2 decades of being a “medical mystery,” I was diagnosed with MAGIC Syndrome, a rare disease that causes widespread inflammation and multi-system organ damage. The toll of the disease on my body is immense, and every day is a struggle to maintain my health, manage countless medical needs, and, most importantly, spend time with Christine and our community.

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<div>On October 9th, just one day before I faced a life-threatening open-heart surgery, Christine and I said our vows in the family waiting room of Northwestern’s cardiopulmonary floor, where I’d spent the preceding month. I was critically ill, and my doctors told me I had two options: undergo open-heart surgery to remove a massive blood clot from my right atrium, which was the root of a dangerous fungal bloodstream infection, or leave the clot in place and accept that I would die within weeks. The doctors had told us there was a very real possibility I wouldn't survive the surgery, but that if the source of the infection wasn’t removed, I would have mere weeks to live.

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<div>With the clock ticking and the future uncertain, Christine and I decided to marry before surgery, allowing me to go under with the knowledge that, no matter what happened, we had celebrated our love for each other. With just 24 hours' notice, 20 of our closest friends and family traveled from across the country to witness our vows in the hospital’s family waiting room. It was not the wedding we planned, but it was a day filled with love and many of the people who mean the most to us.

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<div>The surgery to remove the blood clot took place on October 10th. It was a grueling procedure, and the projected 1-2 days in the ICU stretched into 2 long and scary weeks. My recovery was not linear, and the peaks and valleys continue even now, 6 weeks later. The fungal infection still looms over me, as do poorly-healing surgical incisions, fluid in the lining of my heart and lungs, and the other chronic effects of my disease. I am far from out of the woods, but thanks to the expertise of my medical team and the strength I draw from Christine and our loved ones, I’ve made it this far.

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<div>Now I'm home, and Christine and I are facing the reality of my prognosis. My acute and chronic illnesses have dramatically shortened my lifespan - any further time together is not promised. And while every day feels like a gift, it also comes with an overwhelming financial burden. The costs of living with a rare, complex disease like mine are astronomical, and insurance does not cover many of the expenses that allow me to live with dignity.

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<div>We have many ongoing medical needs that we must pay for out-of-pocket, including:

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<div>- A wheelchair-accessible van, including repairs and maintenance.

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<div>- Retrofitting our home to be accessible, including maintaining my chairlift, wheelchair, and essential accessibility equipment like shower chairs, PT/OT tools, and braces.

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<div>- In-home caregivers to help with everyday tasks, including cooking, cleaning, personal care, and wound care.

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<div>- Special medical supplies, such as expensive wound care dressings and medical tapes I’m not allergic to

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<div>- Threshold ramps for accessibility in and around our home, as well as a ramp to accommodate visiting family.

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<div>- The expensive premiums, co-pays, and deductibles for my health insurance.

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<div>As a result, we are asking for your help. We want to make the most of the time we have left together - time that will be spent navigating hospital stays, doctor visits, and the constant demands of my illness. Christine and I are so grateful the life we have, even in the face of this uncertainty. Your generosity would give us the opportunity to focus on gratitude, on our community, and on each other without constantly worrying about how we will pay for the next round of medical supplies or the next caregiving need. Every dollar helps us maintain my care and ensures we can continue to be together during this incredibly difficult chapter of our lives.

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<div>Thank you for taking the time to read our story. Your kindness and support mean more than words can express.

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<div>With gratitude,

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<div>Annesley Clark and Christine Corso

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Anonymous

LAURA and PETER Seoane

Sarah Allevato

Amanda Gehman

Maeli Goren-Wilson

Nancy Novik

Alicia Xue

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Amanda Buechele

Dana Manarchy

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Help Annesley & Christine Face a Rare, Life-Limiting Illness

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