In the spring of 2013, six weeks after our son Camden was born, Abby was diagnosed with relapsing-remitting multiple sclerosis (RRMS). Symptoms began with blurry vision, loss of balance, and difficulty walking/fatigue. Walking the streets of Manhattan where we lived at the time, she felt and looked like she was drunk and we knew that something was wrong. Tests confirmed our fears.
Nearly five years later, things have progressed to the point of needing a walker 100% of the time and debilitating tremors (especially in her hands), significantly impacting or eliminating her ability to do the following (by no means is this list complete):
Write, type, eat, cut food, cook, walk, run, stand for long periods of time, stand without falling over, drive, hold her son.
Despite ongoing treatment from some of America's best MS neurologists, there is no known cure for this disease. Multiple disease modifying drugs, outpatient rehab, and other protocols have been almost entirely ineffective. Less than one year ago, Abby was still able to walk without the use of a walker, drive a car, write, and function somewhat normally. We know how far the disease has progressed, but we have no way of knowing how much further it will continue to progress. Her newest doctor in Charlotte, where we now live, bluntly told her that she has a "bad luck case" of RRMS simply because of where her lesions are on the brain.
However, hope exists. A treatment called HSCT (hematopoietic stem cell transplantation) is available in several countries outside of the U.S., and in clinical trials within the U.S. Abby does not qualify for these trials, so her only option is to travel abroad, at our own expense, to receive treatment. A clinic in Mexico (http://hsctmexico.com/about-us.html) called Clinica Ruiz has been performing these procedures with notable success for MS patients. In 80% of patients, it has been proven to stop the progression of the disease and some lucky patients experience reversal of symptoms (i.e., have gone from wheelchair to walking).
Abby hopes to be one of these lucky patients, but is being cautiously optimistic and really just hopes for the progression of the disease to stop. Anything beyond that is just a bonus. She is extremely grateful to have so many supportive family members, friends, and colleagues.
The treatment is intense. It is a 28-day stay at the clinic, where she will receive intensive chemotherapy, have her stem cells removed, inserted back into her body, and essentially have her immune system fully "rebooted". She will be at high risk for infection during this period, but the clinic has an excellent record of over 500 patients completing this procedure without serious complications.
She is scheduled to depart for treatment in mid-September 2018. Funds are needed by mid-July in order to secure her spot at the clinic. The funds will cover all medical expenses, transportation, and housing costs (and for her mother as well, who will be going straight from her first month of retirement to being her 24-hour-a-day caregiver).
It is critical that we act NOW. Should the disease progress any further before then, there is a chance that her symptoms may never halt nor reverse.
All Abby wants to do is to be able to walk and play with Camden like a normal mom. Camden is well aware of the fact that his mommy has a disease and while he is very helpful, he just wants the same thing. To quote him directly:
"Mommy, I just want you to go to Mexico and lose your hair so you can do flips again". Abby was a former gymnast, but has no desire to flip again. Just walk :)
- Brooke Dubiel
- Karen Epps
- Matthew Makris
- Barbara DeBerio Carli
- Mary Burns
Organizer and beneficiary