Mikayla Hirsch -
Mikayla, aka KK, was diagnosed with Crohn’s at age 4 – she is now 11 years old. Her parents knew something was wrong when she couldn’t run on the soccer field and keep up with the other kids. She lives by the motto that Crohn’s is a part of her, but doesn’t define her!
Mikayla has been through a whole host of treatments – initially, she started on a handful of oral medications and they worked for a year. Under the care of providers she started on other oral medications and quickly moved to a biologic. At the age of 9, she was doing her own injections. She failed the first biologic and was quickly losing weight, which was impacting her overall health. Her parents decided to get a second opinion with Dr. Dubinsky at Mt. Sinai which turned into moving Mikayla completely under her care. Soon after that visit, she started another biologic and while successful for a period of time, it didn’t completely help her. There was still 10% of her colon not responding – so she was switched yet another biologic, and it has been successful so far!
Mikayla first went to Camp Oasis in 2019 - while apprehensive at first she walked away having the best experience. She met other kids like her who “got her”. Even though the last two years were virtual, she continues to text and FaceTime with her bunk mates. She understands the importance of connecting with other kids with Crohn’s. As a result, she has started support groups for kids her age.
Outside of her Crohn’s, she plays travel soccer and competitively swims. She has never missed a meet, practice or game despite everything going on – she always powers through! Currently, she is swimming two to three days a week (her best strokes are backstroke and freestyle) and playing soccer three days a week.
When she isn’t in the pool or soccer field, she is working hard at school to achieve above-average grades, participate in student council, go to Hebrew School, and be a good role model for her brothers, Josh and Zach.
Dr. Ivan Fuss -
and Dr. Warren Strober before their first clinical trial together.
"Certain things in life leave a lasting impact, whether it might be good times or bad. As a child, I can clearly remember growing up watching my dad struggle with Ulcerative colitis (UC). His disease was quite disabling, and at the time there was little treatment for such a condition. Despite all of this, he always handled it with grace, a smile, and kind words. Ultimately, he lost that struggle and passed away due to complications from UC. Unfortunately, soon after, I too had to deal with a similar struggle in that I was diagnosed with Crohn’s disease. Again, very little was known about these disorders and even less was known about appropriate medications to treat these disorders, especially in children. As I was growing up with Inflammatory bowel disease (IBD), many times I was asked “how can you deal with this disability?” I was often told that it was too disabling and that I shouldn’t continue with schoolwork or strive for more. But I didn’t view Crohn’s as a disability or a disabling type of disease. If anything, I felt that it was a strength that allowed me to see how others can deal with struggles and still reach for their dreams. More importantly, it gave me a sense of determination that I would not let this disorder rule my life. I remember as a young child being taken care of by great physicians who thought there was potential in me; especially in how I chose to live my life. They fostered my interest in medicine and offered me opportunities to learn more. One of these was my gastroenterologist, Dr. Dan Present at Mt Sinai Hospital, who ultimately became a close colleague of mine in the future. He nurtured this interest by discussing medicine and how to take care of patients with me, even though I was a young child at the time. Ultimately, I went on to medical school, a residency in pediatrics, a fellowship in pediatric gastroenterology, and an additional mentorship in mucosal immunology with Dr. Warren Strober at the National Institutes of Health (NIH). I had a dream of giving back to my patients and was given the opportunity to do this through this mentorship. This led to my current role where I can fulfil this dream of taking care of patients and perform research to better understand and manage diseases like IBD.
I felt fortunate throughout the years to know these individuals and to be able to be nurtured in my interests in IBD. This led to many discoveries in treatments, additional learning about genetic disorders, and the mechanisms of disease in both UC and Crohn’s disease. Throughout all this time, I have been able to take care of patients and truly understand their concerns, their fears, as well as their dreams. For many years, I have had the privilege of working with the Crohn’s and Colitis Foundation of America (CCFA), initially as a patient to learn more about my disease, and later as a physician in charge of grant proposals and education through meetings. As a child, the CCFA felt like a home away from home in that they were always able to provide that comfort that I needed. Later, that feeling remains in that.
There are relationships that I have had with the CCFA for much of my lifetime. The Take Steps event is one of the ways that the CCFA can also become your home. This event will help others learn more about IBD and allow the discovery of new treatments for Crohn’s and colitis patients. I always encourage my patients when things get tough: “Take it one step at a time. There is light at the end of the tunnel.” I think together we can take those steps and find the cure for these diseases."
Dr. Erica Cohen -
"It is very heartwarming to see my patients reach milestones. Whether it’s a successful pregnancy, dancing at a granddaughter’s wedding, or going away to college, big milestones represent an accumulation of a thousand small steps. Living with IBD is hard and can make suffering feel invisible – my passion and life’s work is to make sure my patients are seen. I enjoy celebrating their small steps forward and am also privileged to support them when they feel unwell. I am truly honored and humbled to be recognized by the Foundation just for realizing that passion. By partnering with the Crohn’s and Colitis Foundation, I can further advocate for my patients through policy reform, advance scientific research, and develop educational initiatives. Through the Foundation’s dedication and this community’s generous support, I know we will continue to accumulate small steps to achieve big milestones in IBD care."