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Help Cover Medical Expenses for Alana

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Two weeks before Christmas, Alana, my brilliant, witty 25-year-old sister, fell seriously ill with severe myalgic encephalomyelitis (ME). In one day, her life as she knew it was over. She is now 100% bed-bound and severely physically disabled. The purpose of this fundraiser is to get support for her care and treatment.

Alana’s Condition
Alana has had Long COVID since her first infection 2 years ago, but a recent reinfection caused her condition to dramatically worsen. The way that Long COVID manifests in her is diagnosed as myalgic encephalomyelitis (ME). ME disrupts both the nervous and immune systems. Since early December, Alana has been too weak to move her own body or leave bed - struggling to even lift her own arms. Like many ME patients, exposure to light and sound causes extreme discomfort and pain so she lies in a hospital bed with an eye mask, blackout curtains, and noise-canceling headphones all day, every day. She is unable to perform any acts of daily life without the assistance of others. For example, she is fed food and water through a straw by someone else. I share these details to convey how profound severe forms of this condition can be. Unfortunately, people with ME can live in this profound state of disability for decades. We all hope that Alana’s health will improve, but estimates put her chance of recovery at about 5%.

The Millions Missing
ME is often triggered by a viral infection and in Alana’s case, it was COVID-19. In the US alone, about 2.5 million people have ME. That makes it roughly twice as common as multiple sclerosis and yet ME remains an invisible disease to most people. In fact, ME patients are often referred to as “the millions missing.” There are very few doctors who treat these patients, and science has been slow to study it. According to MEaction, “living with severe ME is like living with late-stage cancer, advanced-stage AIDS, or congestive heart failure each day for decades.” However, ME funding relative to disease burden is the lowest among any disease the NIH tracks.

Before Alana’s Diagnosis
It's hard to describe the rare combination that is Alana - incredibly smart but also ridiculously fun. She has always been a wonderfully independent person, and being forced to sacrifice so much autonomy has been beyond tragic. Despite this, she has maintained an inspiring resolve. Any exertion, physical or mental, can cause Alana’s symptoms to worsen, and yet she often uses her small reserves of energy to express love and encouragement to the people around her.

Alana has had to grieve her old self, the girl who would throw herself into any adventure. At Barnard College, she studied environmental science but had to turn down a great job opportunity at the EPA when she got sick. For her, it was soul-crushing to realize that all the time and energy she had spent on academics might come to nothing, because she may never get the chance to work again. That is what ME does. It takes your body and life from you.

Our Ask
Under these circumstances, and under the advice of her doctors, we were told not to bring Alana to the hospital. There are currently no treatments for this condition, so a hospital stay would only exacerbate her symptoms. Both my mom and Alana’s significant other took medical leave from work to take care of Alana. But that medical leave is ending and, like most people, they can’t afford to simply stop working. This is why we are asking for financial support: to help pay for a professional caregiver and medical expenses that aren’t covered by our insurance. If you can't donate at this time, please consider writing to your representatives to tell them we need more funding allocated to ME and Long COVID research.







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Donations 

  • Anonymous
    • $50
    • 4 mos
  • Bradford Keller
    • $100
    • 7 mos
  • Thomas Claire
    • $50
    • 8 mos
  • Anonymous
    • $10
    • 8 mos
  • Frederic H Brooks
    • $200
    • 8 mos
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Organizer and beneficiary

Corissa Masciana
Organizer
Milford, CT
Bruno Masciana
Beneficiary

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