Thank you for taking the time to visit our fundraising page. Our story…..
It entered our life like a thief in the night, a nightmare that stole every sense of normalcy. A tornado sucking out our past existence and replacing it with grating fear, over whelming sadness, unimaginable stress, and a worry of permanent uncertainty. It erupted our friendships making some scatter into the wind. It crushed our careers and decimated dreams. It is a liar constantly spinning a new web of deceit. It is an unwelcomed guest who will not leave but often pretends to.
These are the words I could not say so many years ago when we entered this cold world of IBD, these are the words I struggle to write. While the pharmaceutical commercials show blissfully active patients living their life to the fullest, I know all to well how misleading and deceptive their pitch is. I watched Crohn’s rob the shine from my 7yr old eyes, chap her lips in dehydration, pilfer her nutrition till she was bones, and leave her in excruciating pain. What the commercials fail to tell you is only 50% of pediatric patients reach remission, and there are 3 layers to remission, we have yet to reach.
We are 4 years into our journey and while the blackness has lifted to gray we are still fighting for normalcy. There is not a month that passes without that lying, thieving, Crohn’s appearing. Sometimes it shows up quietly, but it quickly roars. We started 2019 with treatment completely obliviating Kassi’s immune system, we could not go 2 weeks without an urgent care or ER. By spring medically induced psoriasis creeped in along with alopecia making life unbearable. By summer we had failed our first biologic treatment drug. The world spun us upside through weeks of painful transition, once again proving this disease’s unpredictability. The storm just settled before Erythema Nodosum entered our lives, quickly followed by severe joint pain. Fall ushered in Enthestis cheating Kassi of her ability to walk and corneal ulcers depriving her vision temporarily and possibly causing permanent damage. Those who have stood by will notice IBD has been officially named as Crohn’s, winter brought confirmation of ulcers in the small intestine. We cautiously awaited MRI results and blood work to start 2020.
We left 2019, hopeful but with little improvement. In January we finally had some answers that had plagued us for months. In addition to confirming Kassi had sacroiliitis and arthritis she was diagnosed with Chronic Recurring Multifocal Osteomyelitis (CRMO). Kassi is 1:1Million with the MRI showing visible bone lesions throughout her pelvis and lower leg. The pain she had been suffering through had several names but with names comes treatment. Our amazing doctors spent weeks determining how to treat Kassi. We would begin monthly infusion treatments to heal her bones and fight CRMO. In the background some abnormal lab finding caused concern that required a 'pause' on adjusting IBD treatment. So while we had a plan for CRMO Kassi continued to struggle with bouts of external inflammation rendering her immobile at times.
Then the entire world stopped! We were living in history being made as Covid destroyed every sense of normalcy. Our struggles became minor in comparison to the world suffering. As New York shut down so did our access to in person visits. A few more set backs handled virtual, genetic testing on hold, we all did the best we could. The world fractured and we were caught in the middle. Scared due to the treatments Kassi was undergoing, appalled by the careless of some to protect the weak, but forced to continue our visits to the hospital. The sick do not get to stay home in case you are wondering but we hunkered down with the rest of the Northeast and found joy in spending time as a family. We will always be grateful to the front line workers that allowed us to keep our daughter safe (the doctors/pharmacist/delivery carriers/grocery shoppers/ the invisible).
July came with great news: the last infusion and while there is a genetic error it would not impact treatment going forward. Some minor issues and Kassi added a new biologic medicine to her treatment plan. The fall MRI showed her bones had completely healed :)!!! The new medicine combination is working! Kassi is back to dance, Taekwando, and playing with friends (outside of course). That is not to say we do not have bad days, but the good days are more frequent than years prior.
If you got this far – thank you for reading. There is so much to understand about IBD and our experience fighting it. We have been fortunate to find true friends who lift us in our weakest moments and protect Kassi every step of the way. Kassi does not let Crohn’s steal her positivity, her love of life, her amazing spirit, or her courage. The days I want to scream in anger, vent post on social media, I realize I am a bystander in her war. Everyday I am aware of a child losing this battle, lying in a hospital, undergoing major surgery, struggling to just breath. I raise awareness for all the children who fight this awful disease. I did not invite Crohn’s into our lives, I am optimistic the medical community will continue to make advancements in the hopes Kassi can have a healthy life, and I play a small part by fundraising for CureforIBD. I cannot get rid of Crohn’s but I can fight it’s ever lasting presence and its ultimate grip.
If you are waiting to make last minute charitable donations I ask you please consider Team Kassi! Every Penny I raise is donated directly to Mt. Sinai hospital who is taking amazing care of my daughter.
Today we raise money for not only our daughter but every person impacted by this disease.
CURE for IBD was founded on the belief that if more funds are allocated to research, new treatments and cures will be found sooner. For many people, this can't happen quickly enough.
We are very proud to say that 100% of all donations Team Kassi receives will be allocated directly to IBD research. CURE for IBD will not use any of these funds for overhead, administrative, or event expenses.
We can't thank you enough for your support. Your generosity brings hope for so many people, including us.
The mission of CURE for IBD is to fund research towards new therapies and cures for Crohn's disease and ulcerative colitis. CURE for IBD was founded by parents who have dedicated themselves to finding cures for their children and everyone else living with Inflammatory Bowel Disease. CURE for IBD does not pay any participant event or travel expenses, and only funds research with the goal of finding cures sooner.
Over 1.6 million Americans (1 in 200) are affected by Inflammatory Bowel Disease, which includes Crohn's disease and ulcerative colitis, insidious and debilitating diseases in which the immune system attacks the digestive system. These are life-long chronic conditions that often result in extended hospital stays and the need for multiple surgeries over a person's lifetime. Crohn's and ulcerative colitis, along with many of the medications used to manage IBD, lead to an increased risk of cancer and other conditions. Complications can be life-threatening or fatal.
Children are the fastest-growing population being diagnosed, sometimes before the age of 1, and their symptoms are often more severe.