My name is Caryn Benjamin, and I am asking for help for my “niece of the heart” Celestine Rondon who suffers from acute Sickle Cell Disease. Because she is so dangerously ill (she was just hospitalized again for almost a month because of an excruciating pain crisis, plus the disease is destroying her bones), Celestine is #1 on the list at one of the nation’s top hospitals for the new gene therapy program for Sickle Cell patients.
This is the “cure” we’ve been hoping and praying for her whole life.
However, her admission has been put on hold because of uncertainty about the continuity of her insurance coverage. She was covered by insurance through her mother's employer until recently when she turned 26. Although the hospital team is working to find a better solution, right now the only way to keep her insured with a program that will fund the gene therapy program is through COBRA, and that costs over $1,000 a month. This is money that Celestine’s family does not have.
Through the generosity of donors to a recent GoFundMe to help this family with their medical expenses and to find a safe place to live, we raised $5,000. Our most pressing goal at that time was to get Celestine and her parents out of their unsafe, unstable housing situation and into a permanent home. (If you like, you can read more about this below.) However, although their housing crisis is ongoing, now the most desperate, immediate need is for Celestine not to lose her place in the gene therapy program through a lapse in her health insurance. We’ve used some of the money from that first GoFundMe to make the first two months’ COBRA payments, but we only have enough for two more months, and we cannot allow Celestine’s insurance to lapse. Help is needed right now!
I asked Celestine to give me a description of her current situation in her own words, and here’s what she wrote:
Serious Health Condition:
•I have Sickle Cell Disease, a lifelong, life-threatening genetic condition that causes severe pain crises, organ and bone damage, and frequent hospitalizations.
•Stress is a known trigger for Sickle Cell crises, meaning instability in housing, insurance and finances directly worsens my health.
•I am currently first on a list for a gene therapy program for Sickle Cell patients, which could dramatically improve and potentially save my life.
•Gene therapy is not simple or guaranteed:
It requires extensive medical screening
Long-term stability
Strict insurance approval
Ongoing medical oversight
Insurance Crisis After Turning 26
•I recently turned 26, which meant I aged out of the insurance coverage I previously had through my mother’s employer.
•I am now on COBRA coverage through Emblem Health.
•COBRA is extremely expensive, costing over a thousand dollars per month.
•Despite the cost, COBRA is currently the safest option to preserve my eligibility for gene therapy.
•If I switch to Medicaid, there is a serious risk that the gene therapy program will not approve or continue treatment, and that certain hospitals or research programs may deny coverage
•Private insurance is far more likely to support gene therapy approval.
•This puts me in an impossible position:
I cannot afford COBRA long-term
I cannot safely move to Medicaid
Losing coverage could mean losing access to life-saving treatment
Medical Emergency Caused by Stress
•During the past year and a half, the extreme stress from harassment by our landlord, the threat of eviction, and financial strain has repeatedly caused me to go into stress-induced medical crises. This is a real, physical condition caused by Sickle Cell disease. These crises are extremely painful and dangerous.
•I have had to go to the emergency room multiple times during this period, and each time I was admitted to the hospital for weeks until the crisis could be brought under control. Each crisis increases the chance of further damage to my organs and bones.
•Managing a chronic illness while under threat of displacement and worrying about insurance has been physically and emotionally overwhelming.
Friends, now that you’ve read Celestine’s words, I am hoping that you will help. Please donate generously to this GoFundMe, and consider becoming a monthly donor, for whatever amount you can afford. If we can get commitments from multiple monthly donors that total $1,000 a month, together we’ve got this problem solved! We recently had one amazing donor make a private donation of $1,000 to cover a single month’s COBRA payment, but of course that is beyond most people’s means. Every donation makes a difference, and no amount is too small!
Whether or not you can give, please share this fundraiser on social media, and with your family and friends. Thank you in advance for your help!
Friends, if you’ve been kind enough to read this far and you’d like to know more about Celestine, her family, and their desperate situation, please read on:
How do I know this beautiful family? I am a retired teacher of the Deaf and Hard of Hearing. Celestine’s mother Mayceda Rondon is Deaf, and for over 30 years has been employed as a Special Education Paraprofessional. Mayceda and I met when we worked together in my first classroom, and we have been the closest of friends (really, family!) ever since. I was even blessed to be in the delivery room with Mayceda as her ASL interpreter when Celestine was born.
Mayceda is an incredibly hard-working person, both at school and at home. Several years ago her husband suffered a series of strokes that left him cognitively and visually impaired, and since then Mayceda has been responsible for the care not only of her very ill daughter but also her disabled husband. She is the sole support of her family in every way. However, even after over 30 years of full-time, year-round work, her salary as a paraprofessional is woefully inadequate to support her family, but apparently too high for them to get any assistance, not even food stamps. Despite her years of dedication serving some of the neediest children in our school system, and despite her family’s disabilities and never-ending medical expenses, Mayceda’s family has fallen through the cracks in the safety net, and right now that is putting Celestine’s health and future at risk.
Like her mother, Celestine is an amazing person despite a life of adversity. Sickle Cell Disease is a genetic disorder that causes horrific pain, damages the internal organs, and has even destroyed some of Celestine’s bones. During one crisis she developed Acute Chest Syndrome, an excruciating and potentially fatal complication where her abnormal red blood cells clumped up in her lungs. Yet, she has never wanted pity, and has always held onto her dreams. She is a true inspiration to everyone that knows her. She has missed days and weeks of school every year of her life due to illness and prolonged hospitalizations, but she has never given up. With the help of her father who tutored her when she was young, she has succeeded academically at the highest levels. Whenever she was hospitalized or too sick to attend classes, she got the lessons and assignments by email or attended classes online. Her high school awarded her a scholarship, and she went on to graduate from a four-year college with a B.A. She has even taken online classes to earn a license as a Teacher of English to Speakers of Other Languages, doing her student teaching online with her relatives in Panama. (Not to mention that during all those days when she was too sick to go to school, she spent her time not only studying and drawing, but also teaching herself Japanese, Korean and a little Mandarin to add to the English and Spanish she speaks fluently at home, plus some ASL of course.)
Despite her achievements, Celestine cannot work regularly due to days spent in wracking pain and weeks spent in the hospital. Her parents are devoted to her, their only child, but because her father is now also disabled, Mayceda’s meager paycheck is all they have to try to get by.
Did I mention that they can’t catch a break? Over two years ago they lost the apartment they were renting, but were offered a smaller apartment in their building at the same rent. They were considering taking it when a family member seemed to save the day, offering them the use of a house that this relative and her husband own but no longer live in. Mayceda would still have to pay rent, and the house is far from her job so there are increased expenses for travel, plus they would be sharing the house with one other adult member of the extended family, but it seemed like the best thing to do.
I cannot go into details, but since moving into this house, their lives have become a living nightmare, and it’s getting worse every day. They are being harassed, threatened, watched with cameras, and cut off from basic services. The entire family’s health and well-being are worsening due to the physical and emotional stress, but it is especially dangerous for Celestine.
Over and over, fear and stress have triggered a severe Sickle Cell pain crisis, where despite medication the pain is so unbearable that Celestine has to be rushed to the emergency room, and then she’s back in the hospital again, sometimes for weeks or more than a month.
They desperately need to get into safe housing. For over a year now they have actively sought help from government agencies and private agencies, and tried everything they could think of to find other housing, but without success. They just don’t have enough money.
The only ray of hope on the horizon through all of this is that Celestine is on the list for the new gene therapy program for Sickle Cell patients. If she is accepted, she will have to undergo months of treatments including massive chemotherapy, and it is unthinkable for her to come home sick from treatments to that house where she is not safe.
The original goal of this first GoFundMe was to raise enough money to help the Rondon family find an apartment, move, and pay their rent for at least one year, longer if possible. Any money left over could be used to help with their medical and daily living expenses. However now, even though the family may be on the brink of homelessness, the top priority is maintaining Celestine’s insurance so she can receive her cure.
We dream of the day when Celestine is well, because it’s her dream to be able to work and help her mother support the family. Until that day, they need so much help. Please give whatever you can. Even if you can’t give, please share this fundraiser with as many people as you can. We thank you from the bottom of our hearts.