Hamptons Community Rallies Around East Hampton Native Diagnosed With Two Rare Blood Disorders

In August 2017, 26-year-old East Hampton native Jessica Greene was diagnosed with two rare blood disorders: aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). According to Johns Hopkins, the latter affects 1 to 1.5 persons per million people, and tends to occur in young adults. Up to 30 percent of cases of PNH “evolve” from aplastic anemia and both are life-threatening conditions that require significant, expensive medical treatment.

Less than a year following Jessica’s diagnosis, a crowdfunding campaign named “Team Jess” was created on YouCaring.com that (so far) has raised over $100,000 in less than one month. It has been shared over 1,600 times online and over 500 individuals and organizations, some anonymous, have donated to the cause and shared messages of love and well wishes.

According to Jessica’s aunt, Lisa Larsen, donations have come from some far-reaching places. “There are people that donated that don’t even know her, friends of friends,” said Larson. “We have relatives in Ireland and their friends donated.”

The impact this support has had on Jessica, her family, and her friends has been immeasurable and can perhaps be best expressed in Jessica’s own words. In a post to her Facebook page in January, Jessica wrote: “This is just the beginning of my journey, but the amount of support and love I have received in just this past week, it’s honestly one of the most amazing things I’ve ever witnessed. I can’t thank every single person enough. I can’t wait to beat this and give each of you a huge hug and be able to tell you personally how much each of you are helping me save my life.”

Although diagnosed months ago, the following weeks will be crucial in Jessica’s journey. A transplant team has been working to find and secure a donor so that Jessica can undergo a bone marrow transplant. Before the transplant, though, she must receive six to eight weeks of a treatment called ATG (antithymocyte globulin) which is a form of immunosuppressive therapy.

Additionally, Jessica will receive chemotherapy and radiation treatments before she can receive the transplant. Post-transplant, she must be quarantined for two months with care and supervision throughout the entire day, every day. After this period of quarantine, she will be unable to work for the next four to six months. Larsen estimates, given the transplant succeeds, that it will be a year before Jessica fully recovers.

According to the fundraising page’s updates, the cost of treatment had been “greatly underestimated” and what once was an estimated cost of $60,000 has now exceeded that mark. To help with medical bills, Jessica’s family and friends are organizing a benefit in her honor to be held with the American Legion in March.

The event on Friday, March 9 will have food, karaoke, a cash bar, and casino tables with black jack, craps, and poker.

When asked for any further updates, there was not much more that Larsen could share. “Once the donor is in place, they’re looking at admitting her into the hospital at the end of February or beginning of next month to begin treatment,” she said.

“It’s just overwhelming and we are just beyond grateful, to everyone to our family, to our friends, to the community,” Larsen exclaimed. “There were many young people in Jessica’s age group who work hard, yet took the time out to be so generous and thoughtful as to donate to her fundraiser. It speaks volumes about their character.”

To follow Jessica’s story and read updates, please visit www.youcaring.com. For more information about the event on Friday, March 9, visit www.facebook.com.