Hello Friends,

My name is Lauren, and I am a close friend of Elena’s. I am creating this fundraiser on behalf of my lovely friend, who is facing an incredibly difficult medical crisis and urgently needs our help.

Anyone who knows Elena knows how thoughtful, compassionate, independent, and active she is. Watching her lose mobility and independence so quickly has been heartbreaking, but through it all, she has continued to face each challenge with incredible strength while still supporting the people she loves.

Elena is an artist and non-profit marketing professional who is a deeply caring, creative, and resilient person who has spent years uplifting the people around her, including members of Baltimore’s disabled community. She has helped create a disability support group and has consistently shown up for others, especially under-resourced and isolated chronically ill people, while quietly managing complex health challenges of her own. She is someone who works hard, supports her community, and continues fighting for a better future for all despite overwhelming circumstances.

Elena has been diagnosed with Occult Tethered Cord Syndrome, a serious spinal cord condition in which the spinal cord is abnormally attached to the base of the spine. This has caused progressive neurological and systemic symptoms that have rapidly affected her mobility and daily life.

Over the past several months, Elena’s ability to walk has become significantly impaired. She now has drop foot in her left leg, causing her to drag her foot while walking, along with loss of pelvic floor sensation and worsening complications affecting pelvic floor organ function. She is also having episodes of stroke-like symptoms and paralysis. Without treatment, her condition will continue to progress and could result in permanent neurological damage, severe pain, further loss of mobility, and eventually consistent paralysis.

Because this condition is rare, Elena must travel to New York City to receive specialized care from one of the few surgeons experienced in treating Occult Tethered Cord in patients with Ehlers-Danlos syndrome.

On July 6th, Elena is scheduled to undergo spinal cord detethering surgery at Weill Cornell Medicine with neurosurgeon Dr. Jeffrey Greenfield.

I was fortunate enough to undergo this same surgery with Dr. Greenfield earlier this year, and while I still have a long recovery ahead of me, it has already greatly improved my quality of life. Seeing that improvement firsthand is part of why I care so deeply about helping Elena access this surgery and the care she will need afterward. I also want to emphasize just how extensive the recovery process can be, and how important it is that Elena has financial and community support while she is unable to work during recovery.

Due to the complexity of the surgery and recovery process, Elena and her caretaker will need to remain in NYC after the procedure until she is medically cleared at her follow-up appointment to safely return home to Baltimore.

Once Elena returns home, the hard work of recovery begins. She will require several forms of specialized physical rehabilitation and occupational therapy, many of which are not covered by insurance.

On top of this medical crisis, Elena is dealing with a severe housing crisis caused by mold exposure in her previous apartment. The exposure significantly worsened her health and has made it extremely difficult to find safe and accessible housing while preparing for major neurosurgery. She is currently sleeping on an air mattress in my small home office while trying to secure stable housing and coordinate medical care in the middle of these crises.

Below you will find more information about the expected financial burden and ways you can help.

Thank you for considering supporting Elena during one of the most difficult times of her life. Your kindness, generosity, encouragement, and willingness to share her story truly mean the world to Elena and everyone who loves her.

How You Can Help? Every donation, share, and act of support makes a real difference.

1. Share

Please share Elena’s story with your friends, family, coworkers, and community. Maybe someone you know can help, too?

2. Donate

If you are able, donations of any amount will help cover urgent medical and recovery expenses as well as lost income.

Financial Donations will help cover:

3. Donate Your Time

Unable to donate funds? Your time is just as valuable! Once Elena finds a safe place to live, we will need help getting Elena into her new home. This donation does not require intense physical labor. It could include help with cleaning belongings before coming into the new place, organizing her new apartment, unloading boxes, etc. Fill out the short form, and we will reach out to you.

Thank you again for any help or support you can provide!

Much love,

Lauren, Elena, and friends