Please help Alina to get treatment for ME CFS

Please donate what you can to help my daughter Alina come home to Nevada before her lease expires September first.

My precious daughter Alina is fighting a battle no young woman should have to fight. She is battling Severe ME/CFS, a debilitating disease that currently has no cure and no treatment. It is not sustainable to keep her in her Boston apartment because she needs 24-hour care to survive. I want to bring my daughter home!

Alina is bedridden, can’t care for herself, and can’t travel by commercial airline.

Because of Alina’s severe condition, we need to use a special medical air transport to bring Alina from Boston to Las Vegas. She needs to remain completely flat while traveling because she has POTS (Postural Orthostatic Tachycardia Syndrome). Even a 15-degree elevation makes her heart race from 100 to 150 beats per minute within three minutes. The cost varies from $40,000 to $75,000, from the quotes received so far.

I am retired and my husband and I have spent a good part of our savings taking care of Alina in Boston as she has undergone surgery, medical treatments, and a recent divorce. (ME/CFS has tragically cost many people their marriages.)

Before her illness, Alina was a top achiever. My daughter was studying at Harvard and working a lot to learn a new area of work. She was very excited to start her work at Akamai Technologies, one of the top 25 employers in the country at the time. And she spent about 60 to 70 hours a week working there, not giving herself a single complete day off.

In April 2017 she encountered an unknown virus, she thought it was just the flu and continued to push through until she simply couldn't walk 15 minutes to work. But she still continued to work from home. When she couldn't work even from home, because of brain fog and another virus nearly killing her, she had to stop working.

Now, severe ME/CFS triggers seizures from sensory and cognitive overload. Sensory overload includes any light, sound, or smells. Cognitive overload includes listening to anyone speaking even a few words, or simply having another person present in her dark, silent room. She cannot watch TV, listen to music, or enjoy the sounds of nature outside her window. Alina’s disease has robbed her of her life and turned our lives upside down because caring for her is now my full-time job.

She became homebound and wheelchair dependent in 2018, and fully bedridden and completely dependent on a caregiver since September 2020.

In October 2021 she started to experience seizures, triggered by sensory and cognitive overload. It came on gradually. We did not know what ME/CFS was back then. Now she is bedbound in a dark, quiet room 24/7.

But despite all these difficulties, Alina is 100% sure that she can fully recover and be even better in health than before. She keeps trying experimental drugs. Some help, some make it even worse. But she bravely tries different things that can help get her life back. She still smiles every morning when she wakes up and takes her breath. She considers herself to be a lucky and happy person, despite everything.

Alina has medical debt and ongoing medical expenses that she is just not able to cover. Due to this very tough financial situation, Alina and her family hope that your generosity will also help to cover at least part of her medical costs, in addition to air transportation.

- Routine medical transportation:

Transportation to the hospital is by stretcher in a special van, and then she remains on the stretcher from the van to the appointment area of the hospital. It costs about $3000 one way and Alina had four hospitalizations this year alone.

- ME/CFS specialist:

After seeing many traditional doctors in her area, she has finally found a good ME/CFS specialist. She doesn't work with insurance, but she is a real specialist who works only with ME/CFS people. One appointment with her is $750 per hour. She is currently running genetic tests for Alina, which are also extremely expensive, but will help her receive appropriate treatment for her symptoms.

Still, the main reason we are asking for your help on Alina’s behalf is that she doesn’t have enough money to fly home. The money raised will help Alina come home before her lease expires so I can continue to care for her around the clock.

Please donate what you can, every dollar helps!

If you could share this campaign with others, your effort on her behalf will mean the world to us. If everyone shared with their friends and even a small percentage could help, we will have a chance of bringing Alina home and continuing to care for her.

Thank you so much for your donation.

With gratitude,

Tanya (Alina’s mother)

P.S. If you know someone who, after Covid or any other kind of illness, becomes unusually exhausted from normal activities, information about ME/CFS in the links below may help them avoid becoming as seriously ill as Alina.

For Family and Friends includes links to research and medical information:

https://www.galenwarden.com/post/for-family-and-friends

Crash Prevention helps you determine if you might have early, mild ME/CFS and, if so, how to possibly avoid a gradually worsening condition:

https://www.galenwarden.com/post/crash-prevention

Galen Warden is a friend of our family’s. Her son James is as severely ill as Alina.