Welcome to Our CURE for IBD family fundraising page!
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 unwelcome 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 obliterating Kassi’s immune system, we could not go 2 weeks without an urgent care or ER. By spring medically induced psoriasis crept 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. What shall winter bring? Those who have stood by will notice IBD has been officially named as Crohn’s, winter brought confirmation of ulcers in the small intestine.
UPDATE MAY 2020: 2019 came to a close awaiting additional MRI results. The reading from Kassi's pelvis showed Sacroiliitis in both joints and 'abnormal' readings. Having her enthesitis misdiagnosed caused concern on finding the right rheumatologist. Mt. Sinai directed us to Dr. Onel at HSS who confirmed that Kassi has another auto-immune Chronic Recurrent Multifocal Osteomyelitis (CRMO), she is now truly 1 in a million. A full body MRI discovered there were several bone lesions requiring treatment as well as severe arthritis in Kassi's legs. The only glimmering light is that IBD, CRMO and arthritis can be associated with the same gene, therefore if we can reach remission with IBD, treat the CRMO, everything could go into remission! There is a light to chase. As we chase Kassi will undergo her monthly shots, new infusions, and we are just finishing up genetic testing to start an additional treatment. We are fortunate to have the best health care providing us the most amazing doctors and outstanding treatment. I would like to point out that Kassi has been forced into a wheelchair several times this year, her mobility is severely impacted, that the handicap placard for what appears on a good day an abuse of power, is not. Please remember to be kind to one another, to not judge others, as only in their shoes do they hold the truth.
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.
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.
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