My name is Larenza, I'm a mother, a firefighter/AEMT, a surgical tech, massage therapist, entrepreneur, and a woman who has lived with sickle cell disease since birth. I have many roles but the one that takes up more time and energy than any of those is patient. I have spent countless hours in hospitals & Dr's offices, pharmacies, etc waiting to heal, waiting to be seen, waiting for results, waiting to resume my life outside this illness. I have missed SO many opportunities & events or have had so opportunities be out of reach.
For the entirety of my life, I have learned how to keep going while hurting. I have responded to emergencies while managing my own medical battles, sometimes despite my own battle. I have cared for others while quietly carrying exhaustion, pain, fear, and the uncertainty that comes with a lifelong blood disorder. I have raised my children while doing everything I could to keep sickle cell disease from taking away the life we have worked so hard to build.
Now, God has placed an opportunity before me that I once could only pray for: I am going to be able to undergo gene therapy for sickle cell disease. A functional cure that would help slow or stop the damage sickle cell has caused to my body. No possible blindness, liver or kidney failure, no pulmonary embolism, no seizures, no enlarged heart, no colon issues. It wouldn't repair anything, but it would help stop the cascade of failure that could threaten my future, & the future of my kids.
This treatment offers the possibility of a life no longer controlled by sickle cell crises, progressive complications, hospital visits, and the constant question of what this disease may take from me next. It is an extraordinary opportunity—but it is also an overwhelming journey physically, emotionally, spiritually, and financially.
This will not be a quick procedure followed by an immediate return home. The full treatment journey is expected to take approximately one year.
My own blood-forming stem cells will first need to be collected and sent to a specialized laboratory, where they will be prepared and genetically modified. Once the gene therapy is ready, I will enter the most intensive phase of treatment. I have been told to prepare for a hospital stay of approximately six to eight weeks.
During that hospitalization, I will undergo powerful chemotherapy to destroy the diseased blood-forming cells in my bone marrow and make room for the genetically modified cells. This treatment will temporarily leave my immune system severely weakened, placing me at significant risk for infection and other complications.
After chemotherapy, my modified stem cells will be returned to my body through an infusion. Then comes the waiting—the vulnerable period when my medical team will watch closely for the new cells to take hold and begin producing healthy blood cells. I may require transfusions, antibiotics, immune-supporting medications, or other treatments to prevent and manage complications while my body begins rebuilding itself.
I will be physically separated from the everyday life I know while my children continue needing their mother.
The total price of sickle cell gene therapy and the extensive medical care surrounding it can exceed $1 million. I am pursuing every available resource through insurance, the hospital, and patient-assistance programs. However, even when major treatment expenses are covered, insurance does not keep a family’s entire life afloat.
My mortgage will still be due while I am hospitalized. The lights must stay on. Groceries must remain in the house. My children will still need transportation, clothing, meals, school supplies, educational support, guidance, reassurance, and the comfort of knowing that their home will remain secure while their mother fights for her health.
Those needs may sound ordinary, but during a year-long medical journey, the ordinary things can become the heaviest burden.
There may be long periods when I cannot work as a firefighter, care for massage clients, or generate the income my household depends upon. Even after I leave the hospital, my recovery and medical monitoring will continue. I do not know how quickly I will regain my strength or when I will safely be able to return to work.
As a mother, one of my greatest fears is not simply undergoing chemotherapy or facing weeks in the hospital. It is the possibility that choosing a healthier future could place my children’s present stability at risk.
I have spent my adult life serving other people. As a firefighter and AEMT, I have answered calls during some of the most frightening moments of people’s lives. As a massage therapist, I have helped people living with pain, stress, exhaustion, and physically demanding careers. As a mother, I have poured everything I have into raising, protecting, and providing for my children.
Today, I am humbly asking others to stand beside us.
Funds raised through this campaign will help with:
- Medical expenses not fully covered by insurance or hospital-assistance programs, & co-pays for meds & medical equipment
- Travel, lodging, transportation, and other treatment-related costs
- My mortgage, utilities, groceries, and essential household bills
- Lost income during treatment, hospitalization, and recovery
- My children’s educational, transportation, and daily living needs
- Caregiving and household support while I am hospitalized or physically unable to manage everything
- Medications, follow-up appointments, and recovery-related expenses
- Unexpected costs that may arise throughout this year-long process
My faith has carried me through every crisis, every hospital stay, every painful night, and every season when I did not know how I would make it through. I believe God opens doors, but I also believe He often sends His help through the hands and hearts of other people.
This treatment is not an easy escape from sickle cell disease. It will require me to walk directly into one of the hardest seasons of my life, trusting that healing may be waiting on the other side.
If God allows me to complete this treatment and walk into a healthier life, I intend to pay this blessing forward. I want to use my experience to educate and encourage other families affected by sickle cell disease, advocate for greater access to life-changing treatment, continue serving my community, and one day help another patient feel less alone while facing this same journey.
Your gift would not simply help pay a medical bill. It would help preserve a home while its mother is hospitalized. It would help protect my children’s education, stability, and emotional well-being. It would give me the chance to pursue healing without watching everything I have worked for collapse in my absence.
If you cannot donate, please pray for me, pray for my children, and share this campaign. Every prayer, every contribution, and every share brings us closer to the possibility of a life beyond survival.
I am stepping forward in faith—not because I am without fear, but because I believe my story is not finished. Success is where preparation & opportunity meet, starting new is the prep phase & I need your support dearly.
I am praying for healing. I am fighting for more time with my children. And I am believing that the blessing I receive today can become hope for another family tomorrow. I am blessed to have the opportunity & only wish it would have come sooner so that my sister could have had the opportunity along side me.
I will continue to advocate, speak up, educate, & help encourage others and their families afflicted with everything that sickle cell throws our way.
Thank you for standing with us, supporting us, & sustaining us. I will keep everyone as updated as I could throughout the journey
With faith and gratitude
I love y'all ❤️
Larenza 💚
