Support Natalie's Fight Against Long COVID

As some of you may know, Natalie has been battling Long COVID for almost 2 years now.

This illness has been debilitating. She spends most of her days in bed, struggling to do simple tasks that so many of us take for granted. Visits from her friends and family may cause her to crash which can take days or weeks to recover from. Her husband, Greg, has become her caretaker while also working a full-time job to provide for the two of them.

Natalie has a major opportunity to go out of state for treatments at the end of October.

The treatments are for a total of 4 weeks and will cost $17,000 and none of this is covered by insurance. This does not include a place to stay, which will be an additional cost. These treatments have the potential of improving Natalie's quality of life and even a slight possibility for improvement is something that simply cannot be passed up. Two years is way too long for anyone to be living this way, it cannot be stated how much her friends and family miss her presence in their lives.

Natalie has already been paying out of pocket for different treatments she's been trying at home, which include IVs and injections. So far, she has spent at least $20,000. This includes out of pocket expenses on testing, lab costs, doctor visits, meds, home blood draw fees, etc.

If you know Natalie, you know she is not one to ask for anything. Let's help alleviate some of her and her family's stress and raise money for these treatments so they can focus on what's important—getting Natalie back to herself again.

Below is a letter Greg had written to a judge when they were fighting to get Natalie on disability.

I urge you to read this letter to get a better perspective on the unimaginable toll this has taken on Natalie and those close to her. You'll also see some pictures of Natalie before and after this awful illness.

If you have the means to donate, please do. If not, please consider sharing. Any additional funds given past the requested amount will be donated to the Open Medicine foundation to help find a cure for those that have been plagued by Long Covid and ME/CFS.

Long Covid Moonshot

Greg's Letter:

"To whom it may concern,

I’m writing to you on behalf of my wife Natalie Eva (Schanck) who has been diagnosed and stricken with Long Covid/Myalgic Encephalomyelitis (ME) since October of 2022. Prior to my wife’s illness she was a hardworking and brilliant individual who excelled at both work and school. While working part-time she was able to finish third in our class at Scituate High School in 2005 and then graduated with high honors from Bryant University obtaining her accounting degree in 2010. Her professional career included working at Penske Automotive for over 4 years and then at Wheeler School in Providence for over 7 years. Prior to her departure from Wheeler in March of 2023 her position was the Accounting Manager in the finance administration, second only to the CFO. Natalie was beloved by many of her colleagues at Wheeler and the CFO had discussed a succession plan with Natalie numerous times in the hopes that she would eventually take over that role. When Natalie was struck with this disease she was unceremoniously let go of her job at Wheeler in March of 2023. This was devastating to both Natalie and those that know and care about her. She lost everything that she had worked so hard to obtain and no one would willingly give that away.

This was Natalie’s second time contracting the COVID virus and it appeared that the illness would run its course over a few weeks and Natalie would recover as she did in 2021. While this seemed to be the case, she soon began to experience extreme muscle weakness in her body in addition to brain fog. She struggled to get out of bed and could not sleep for nights on end. We visited multiple doctor offices and emergency rooms, across CT and RI seeking treatment only to be met with ignorance and indecision. Desperate, we began to reach out to anyone we could find that would listen to her plea for help. We have been met with numerous dead ends, countless prescriptions and supplements that could even give her back the slightest gain of function. It took months to find a medication that would allow her body and nervous system to relax, allowing Natalie to get some sleep. I can only describe those first few months as torture. I had the unfortunate experience of watching my godmother battle and eventually succumb to breast cancer and even considering that I have never seen anyone’s body betray them as quickly and devastatingly as Natalie’s had.

Natalie’s fatigue persists long after dealing with the initial COVID virus infection and has left her fighting to get back to the life that she previously held. There have been days where Natalie could barely move, breathe and eat. She describes waking up each day as if she is wading through thick fog, her body weighed down by an invisible force that saps all her energy and leaves her gasping for breath at the slightest exertion. Prior to catching COVID in October of 2022 Natalie had been working with a personal trainer and loved hiking and being outdoors. My wife, who was once full of energy and spontaneity is now bedridden at 35 years old and completely dependent on myself and extended family.

To provide some background, Natalie and I met in 2018 and were married on June 4, 2021, at Yosemite National Park. We chose this location for our love of the outdoors and wanted to see one of the most beautiful parks in the country. It was an amazing experience, and we were so lucky to have all our loved ones around us to start our new life together. Natalie was always taking the opportunity to book us a new adventure and we loved frequenting upstate New Hampshire. Natalie started personal training in the late summer of 2022 setting her sights on Mt. Washington for 2023. We conquered Mt Williard many times and she was so excited to work towards this new goal. All these plans and more came to an immediate stop once Natalie fell ill and I hope and pray that she will get there someday.

Physical symptoms aside, the toll on Natalie’s mental and emotional well-being has been profound. Imagine the frustration of not being able to partake in activities once enjoyed, the anxiety of uncertainty about our future together, and the isolation that comes from feeling misunderstood by those who cannot comprehend or don’t want to accept what has happened. No person should have to experience the joy of finally finding the one person who you want to do everything with only to have that ripped away. It has been heartbreaking to watch my wife and partner battle back to a fraction of her former self.

Simple tasks that were once taken for granted—like climbing stairs or even holding a conversation—are now exhausting. She must consistently turn away family and friends from visiting because the repercussions are too great. In addition to the relentless fatigue, brain fog, and muscle weakness there is also light and sound sensitivity which keep her in a dark isolated and make every day a struggle against an adversary that seems insurmountable.

Perhaps the most insidious aspect of severe long COVID is its unpredictability. Natalie may experience a slight reprieve in symptoms time and again and have family visit but there is a price to be paid for this hour or so of interaction. She will undoubtedly experience a “crash” which sends her body spiraling and may keep her bed bound for days/weeks on end. When this happens, I must monitor and provide even more assistance than normal. Natalie showers once a week with my assistance and cannot stand up, she either sits in the tub or on the shower chair we purchased while I clean her hair and body. In addition to the shower chair, we have bought a wheelchair for any visit outside of the house and a fold-up highchair so that she can sit in the kitchen on occasion. She had done her best to try and take on additional tasks in an effort to work back to a normal life, but it has not been sustainable, and consequences are severe for attempting these basic tasks.

She has an incredibly strong will and while this virus may have devastated her life currently, she continues to fight each day. This brilliant woman was able to navigate through a top university, put together a great career and buy a home all on her own (which we still live in) prior to this virus. Despite the immense challenges Natalie faces daily, she remains resilient, drawing strength from the unwavering support of loved ones and the solidarity of the Long COVID/ME CFS community. Behind the statistics and headlines are real people—mothers, fathers, siblings, and friends—whose lives have been forever altered by this relentless disease. While the pandemic may seem over and life has returned to normal, for many the fallout has been devastating and life altering. My wife has lost her independence, health and career to COVID. She has always been a hard worker, an upstanding citizen and provided charity to others within the community.

Given the information discussed above, I am hopeful I have been able to provide the background and basis for our request. What we have experienced appears to fit the exact purpose of the Federal Social Security Disability Program and I request that Natalie be approved for participation in this program.

I appreciate your time and consideration. This has been the most difficult and trying time in both of our lives and the hope is that this disability approval can support Natalie while she continues to fight for the life that was unwillingly snatched away.

Sincerely,

Greg Schanck"