Help Lynx Survive Severe ME CFS

Lynx Mitchell, who we love dearly, needs our help. She has been suffering from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) with increasing severity for five years now. She cannot leave her bed, is unable to read or converse, and is hypersensitive to all sensory inputs. Lynx needs additional caregivers, more advanced treatments, and help with mounting medical bills. We’re reaching out at a critical juncture when Lynx needs our support more than ever.

2024 UPDATE

The past year has been incredibly stressful for the whole family, with several emergency hospital visits and financial resources stretched thin.

While Lynx was in the hospital for the feeding tube surgery, her mom caught Covid. A group of Lynx’s friends rallied an emergency response, flying to South Carolina to be with Lynx in the hospital. Thankfully, the surgery went well and Lynx’s nutrition has improved with the feeding tube, but this episode highlighted the urgent need for Lynx to have more people on her care team.

With help from this crowdfunding campaign, we were able to raise enough money to hire a part-time caregiver, Angela. Angela is an incredibly skilled ICU nurse, and we are so grateful to have found her. She comes in 6 days a week to cover Lynx’s afternoon care shift, providing a much needed break from caregiving for Lynx’s mom. Lynx is benefiting greatly from Angela’s care and expertise.

Unfortunately, Lynx’s insurance in South Carolina does not cover any home care services, so the family is forced to pay Angela out of pocket ($4,000 per month) – a very unsustainable cost in the long run.

WHY WE ARE FUNDRAISING

Lynx’s family and friends have come up with a plan to address Lynx’s needs over the long term. As soon as possible, Lynx will move back to Massachusetts, where she will have better access to medical treatments, insurance coverage, and caregivers.

Here’s where we need your help! The process of moving Lynx will be VERY expensive. Because of Lynx’s orthostatic intolerance, she needs to remain lying down during the whole flight, or she’ll experience a dangerous drop in blood pressure. A commercial plane is not equipped to meet Lynx’s needs, so our only option is to charter an air ambulance. This flight will cost approximately $22,000.

On top of that, the monthly rate of a full time care facility for Lynx will be about $20,000 (at least until insurance kicks in). Finding a care facility that will admit Lynx is proving difficult – some have denied her because of her specific needs or her age. A nursing home is not equipped to care for her, so a care facility specializing in neurological disabilities will be more appropriate.

Once in Massachusetts, Lynx will be able to get on MassHealth (Medicaid). This will open up possibilities like PCA benefits, where insurance covers the cost of home caregiving. Lynx will also be able to see doctors and specialists in Boston who are much more familiar and competent with her diseases. She also qualifies for subsidized housing in MA and has a shot at getting bumped off the waitlist once she returns to MA. In terms of her support network, many of Lynx’s friends and family in Massachusetts will be able to pitch in and help her with the transition from South Carolina. In short, moving to MA is the best option for Lynx going forward.

But Lynx and her family are unable to finance such a big move like this on their own. What's more, Lynx's current living situation is becoming untenable for her and her family and she will likely need to move within the next week. Please contribute to this GoFundMe and share it with your communities so we can make Lynx’s move possible.

THE BACKSTORY

In May 2019, Lynx began experiencing severe exhaustion. Physical and mental activity – even mild activities like listening to a podcast or standing up to prepare a meal – drained her energy for hours. On January 8th, 2020, Lynx caught the stomach flu and her energy level never fully recovered. She was forced to stop working, stay in bed almost 24/7, and dip into her savings for necessities like rent and food. In 2021, the risk of getting COVID on top of her existing health issues posed a real threat. Lynx decided to leave Boston and move back home to South Carolina, where her family could take care of her. Lynx’s mother left her full-time job as a branch manager of a large library to stay at home and care for her daughter, reducing the family’s income.

IMPACT OF THE DISEASE

ME/CFS is a complex, serious, and debilitating illness that affects multiple systems of the body. It’s characterized by profound exhaustion that can last for hours, days, or weeks. The symptoms Lynx experiences are extremely intense. She’s unable to bathe herself or use the bathroom. She wears diapers. She’s forced to lie down, still and quiet, to avoid debilitating cognitive and sensory overload. Even the sound of birds chirping or the smell of scented body products causes her pain. In addition to ME/CFS, Lynx suffers from Hypermobile Ehlers-Danlos syndrome, a connective tissue disease that affects her autonomic nervous system, joints, and GI system. She also has OI (orthostatic intolerance), which means her blood pressure drops severely low when she raises her head at all. She is unable to eat due to severe GI pain, and relies on a feeding tube for nutrition.

Anytime Lynx needs to see a doctor, a private ambulance has to be hired for $600. The local fire department is called to carry her down a flight of stairs and put her onto the ambulance stretcher. Lynx’s head cannot be raised at any time during the process. The travel cost to obtain specialized medical care is even greater: for example, when Lynx had to travel from Charleston to Greenville, SC, to have a special upright cervical MRI done, the cost was $3,000.

Beyond her physical symptoms and limitations, Lynx is socially isolated. She’s only able to stay connected to her friends through “silent video calls,” where she can experience her friends’ company, even if she can’t speak.

LYNX IS...

Lynx is a college graduate, fiercely independent, with a passion for disability advocacy. She began this work by advocating for herself: while Lynx was in college, she lost the ability to type on a laptop without serious and painful health repercussions. So she worked with Accessibility Services to get technology that allowed her to continue her education. After graduation, Lynx moved to Boston, where she was employed as a caseworker for folks with disabilities until her own disability forced her to resign.

Lynx is a deeply creative and expressive soul, an avid reader and a talented writer. When she first became ill, she could distract herself from the pain by reading. But then reading and writing became more and more difficult, to the point where now, she can’t do either.

Lynx also loved to dance and became very involved in the blues/swing dance scene while at college in Connecticut. It’s heartbreaking for us as her friends and family that she can no longer express herself in that way.

Lynx has been forced to put her entire life on hold as she struggles to navigate these debilitating symptoms.

PLEASE HELP

We love Lynx. That’s why you’re reading this. Lynx’s incredible determination and courage are a huge reason why we’re here. We believe in her with all our hearts, just as she’s believed in us. Lynx isn’t giving up. So we can’t either!

Thank you so much for your support. For donating, for sharing – every little bit counts.

With love and gratitude,

Lynx’s Support Team