Extend a Hand for my cousin, Laurie
Dear friends, family, and community,
This is my cousin, Laurie.
She is one of the most incredible people I have ever known.
And she is very sick.
In July of 2000, Laurie was diagnosed with Laryngeal Dystonia, a neurological disorder which causes muscle spasms and tremors in her voice. Our family felt terribly for Laurie. My 4 year old cousin, Veronica, announced at a family party that “we all need to learn sign language, so Laurie doesn’t feel so left out.” Laurie depended on Botox injections in order to speak, though still only intermittently. Having been studying community organizing with a focus on health policy change, Laurie gave up this career path as the vocal demands were simply too great.
Laurie found a new job as an editor, which she truly enjoyed, and she never lost her passion to help others. Laurie joined the national organization that supports her voice disorder, and aided new patients on-line, finding them assistance programs in their state and offering emotional support. She ran a support group, organized one of the association’s largest patient symposiums in New York, and was the youngest person to join the organization’s Board of Directors. Laurie worked tirelessly for others. At her day job, she would assist her co-workers when they had problems with their health insurance or child support issues. She helped a college friend struggling with mental illness and homelessness connect with much needed resources. Laurie still carries her passion to help, but her health has made even that passion more difficult.
Things have dramatically changed for Laurie, and we, in turn, can help her.
In 2009, Laurie’s health began to deteriorate. It is impossible for me to outline all of her medical problems in this letter, but this is what I know. What started with a rare infection in her esophagus has graduated into a very dangerous illness.
Laurie’s health has been on a confusing downward spiral. Her dystonia spread to her neck, arm, hands, and back in the last several years. Laurie later developed an esophageal candida infection with signs of a weakened immune system. She has had MRIs which show bone marrow abnormalities, the root cause of which is still unknown. In addition to the above, Laurie has been diagnosed with migraines, photophobia, hyperthyroidism, osteopenia, unprovoked fractures, anemia, gastroparesis, esophageal motility abnormalities as well as swallowing and aspiration problems. Her mobility is limited by pain and her balance is compromised. Laurie’s vocal folds have also webbed, compounding her already compromised voice. Simplified, her combined symptoms leave Laurie in a state of constant nausea with dangerous weight loss, severe pain, exhaustion, and extreme light sensitivity. Her symptoms recently spiraled out of control leading to a two-week hospitalization and surgery which has left her relying on a feeding tube for supplemental nutrition.
Laurie’s health and voice have essentially been stolen from her. She is 5’7” tall and her weight hovers around 100 lbs. Managing her most debilitating symptoms, constant nausea, and pain are an everyday struggle. Laurie describes the nausea as a stomach virus that never goes away. She takes two powerful anti-nausea medications to help her try to continue to eat. Her pain makes it difficult for her to fall asleep. Her photophobia and persistent migraines have forced her to cover her windows with dark curtains so the outside light does not further exacerbate her already debilitating symptoms. She wears dark sunglasses all the time, indoors and out.
Despite multiple specialists and abnormal and conflicting test results, Laurie does not have a full diagnosis. She is currently under the care of specialists to aggressively manage her deteriorating health while attempting to help identify a clearer overall diagnosis. A potential connection between her conditions could help target her treatment and, more importantly, improve her quality of life.
Laurie has drained almost every possible resource available to her and has fallen into growing medical debt. Between the $934 monthly cost of her health insurance plan, enabling her to maintain access to doctors in New York and diagnostic centers all over the country, out-of-pocket payments for out of network specialists or services not covered by her insurance, medications, and hospital deductibles, Laurie sometimes re-thinks some of her medical appointments, wondering which doctors may be able to help her and which may not. And that’s just it. With an illness like hers, Laurie should never be forced to wonder which doctors can help her, before she even sees them, when she is not fully diagnosed. Laurie’s medical costs will continue to total tens of thousands of dollars per year.
Laurie has fought through this horrendous maze of illness in such an inspiring way that I can hardly find the words to describe it. As powerless and disillusioned as she feels, with her spirit partially shattered, Laurie remains resilient, finds some of the best doctors, advocates for herself through whispered discussions and negotiations over her medical care, or has family members speak for her and step in when she cannot. Her desire to find answers and her hope remains. Laurie is 35 years old. She wants her life back, one she admits does not have to be perfect; "It just has to be better than this."
Here is where you can help. We cannot donate our health and we cannot make this all go away, but we can help her to continue seeing the medical professionals who have been treating her. We can help her continue to access the best care, maintain her insurance and access to medications. We can help Laurie find answers to a rare, difficult and confusing illness, and ultimately a full diagnosis. A full diagnosis could help her receive more targeted treatment. Please contribute and help my amazing cousin. Extend a hand to help someone who helps so many.
Thank you for reading about Laurie, and an extra thank you to those willing to help. Your donations will be appreciated and put directly to the continued medical care for one of the most important causes I know.
To donate, you may mail a check to Laurie at:
60-20 59th Road
Maspeth, New York 11378
You can also donate on-line by clicking here: