Danita's Life-Changing Treatment Opportunity
Help Danita Access Treatment for Fistulizing Crohn’s Disease
The tl;dr:
Hello friends, I’m Danita and since 2019, I have been struggling with new complications of Crohn’s Disease that have made a huge impact on my quality of life and my wellbeing. I have the opportunity to receive potentially life-changing treatment and help advance Crohn’s research through participating in a clinical trial of an extremely promising regenerative therapy - the only therapy with a good chance of healing these complications.
I have just been accepted into the study at the Cleveland Clinic, and next month I'll take the first of up to 14 visits to Cleveland, Ohio! Because of travel expenses and treatment-related costs, I won't be able to complete the study without your help. I'm seeking support to raise the funds I'll need.
Please don't give more than you can afford! All donations of any size are gratefully received to help me reach my goal.
Scroll down to read more about my journey to this point, details of the study, how funds will be used, and other ways to help.
Why Funds Are Needed
-Airfare and ground transportation ($18,500)
-Food and hotel ($3,800)
-Copayments for required procedures, tests, & appointments ($12,000)
-Medical chaperone services ($500)
-Petsitting services ($1,600)
-Travel needs ($160)
-Miscellaneous medical supplies ($150)
I'm basing these estimates on current prices. The total amount I think I'll need after personal and family contributions comes to around $24,000.
Other Ways to Help
-Rides to/from airport (could be very early or late)
-Airline miles
-Petsitting/garden watering
-Share my fundraiser with others
-Gifts or loans of travel items:
-Inflatable donut pillow to allow me to sit for long periods of time
-Highly insulated food thermoses and travel bag to bring food I can eat (I can't eat airline food or at the airport)
-Travel-sized toiletry bottles
-Tablet or kindle for long hours on flights and in airports
-A book of your favorite short stories
-Clothing or footwear appropriate to a Cleveland winter, for the visits later in the year
I need to raise the funds to commit to the full course of the study, which is 4 potential rounds of treatment. If I were to complete the trial early (fewer than 4 rounds needed), I would like to use any remaining funds for ongoing medical expenses not directly related to the trial. This includes things like existing medical debt, prescription costs, laboratory costs, colorectal surgery office visits and procedures, GI office visits, treatment for muscle, joint, and tendon issues, mental health support for help coping with the disease and its social and emotional effects, medical supplies, and eye health (Crohn's disease patients can experience ocular manifestations). In the case that there are any funds not needed for medical costs, I would donate to Color of Crohn's and Chronic Illness, a non-profit dedicated to improving health equity and the quality of life for people of color affected by IBD and other chronic illnesses.
What Your Help Will Mean to Me
Through decades of living with chronic illness, I've learned to be resourceful and tenacious. I've never needed to ask for financial support before. But now, I'm faced with complications that are emotionally devastating and physically draining, and for which there is no other effective treatment (while surgeries for fistulas exist, I'm not a candidate because of the low success rate and high likelihood of recurrence in Crohn's disease patients, plus the complexity of my case). "Management" just consists of living with the situation, and I won't accept that this is my life forever. The only other option would be to have an ostomy, which I would really, really like to avoid.
There's nothing shameful about ostomies! For most people who receive them, their ostomy improves their quality of life and is quite manageable. However, when I received my temporary ostomy as part of my j-pouch surgery, I didn't have a good time and it wasn't very manageable. I don't believe it would be a good solution for me based on my previous experience.
This clinical trial will study stem cell injection (derived from healthy adult organ donors) to treat perianal and rectovaginal fistulas in patients with Crohn's disease and a j-pouch. Early results are amazing, showing 50-80% of patients completely heal their fistulas within 6 months of treatment!
Getting to Cleveland to participate gives me a real shot at healing - to return to a more active life, take a bath, go swimming, get a good night's sleep, be free of daily pain, regain social connection, and not be stuck close to home dealing with gross body stuff all the time.
My Crohn's Disease Journey
Crohn's disease is an autoimmune disorder primarily causing inflammation in the digestive tract - anywhere from the mouth to the anus but most often the colon. It can also affect the joints, skin, bones, eyes, kidneys, and liver. There is no cure for Crohn's disease.
Diagnosed as a teen in 1997 (originally with ulcerative colitis), I’ve been on dozens of different medications, had more hospitalizations than I can count, experienced severe anemia and weight loss, and survived extreme vomiting, diarrhea, blood loss, severe abdominal pain, debilitating fatigue and weakness, brain fog, joint pain, and so much more. Ultimately I had my colon entirely removed in 2011 and a j-pouch constructed (called an ileoanal anastomosis). My surgeon told me my colon pretty much fell apart in his hands. 
Following surgery, even though I was still impacted by Crohn’s disease, my quality of life was so much better! I was so grateful to my surgeon and my care team, and things were relatively stable.
Until...
2019 was the beginning of some very not-fun complications that began with an out of the blue trip to the ER for emergency surgery. 
As my disease took a turn into fistulizing disease, the next 9 months would be full of additional surgeries, ambulance rides, having to walk around with drains dangling from my body, pain that wouldn’t let me sit but wouldn’t let me stand for more than a few minutes either (hanging out in the fetal position FTW!), an emergency blood transfusion, a stay in the ICU, emergency gynecological procedures, rounds of antibiotics, honestly it’s a bit of a blur but this was a very difficult time. 
After these acute episodes, I am left with the ongoing debilitating effects of fistulizing disease.
I am very fortunate and grateful to have a job that has allowed me to continue working mostly from home, but my income has been limited since I'm limited in the amount and type of work I can do, while also having a lot of medical expenses.
My rent has also gone up, since it was no longer safe for me as a person who takes immune-suppressing medication, to stay in a large community during a pandemic, and my food expenses have gone up since I am following a specialized diet to try to heal inflammation and avoid triggering my immune system.
Clinical Trial Details
Directed by Dr. Amy Lightner at the Cleveland Clinic, the study is a randomized double blinded trial of an experimental allogeneic mesenchymal stem cell injection to treat perianal and rectovaginal fistula in Crohn's disease patients with ileoanal anastomosis. Whew! In other words, stem cells are taken from the vertebral bone marrow of adult donors, multiplied in a lab, and then directly introduced to the wound tracts, where they promote healing.
In the first phase, 50% of patients will receive the treatment and 50% placebo. At the end of the first phase, the study will be unblinded and those who received placebo will then receive the treatment.
Each phase consists of up to two rounds of treatment, with several follow-up visits for each round. Treatment or placebo is given by injection under anesthesia. After three months, if patients are not completely healed, a second injection is administered. The study lasts for up to a year and a half, depending on whether I start with treatment or placebo and how I respond to treatment when I receive it.
Click here to listen (transcript is also included) to a 10-minute podcast by Dr. Lightner discussing her research.
Thank you so much for your interest and support! I promise to send updates along the way. I feel the love and support of everyone in my community whether or not they are able to make a donation.
