[PERSONAL]: Please Donate to Take Steps to Cure IBD! (I'll tell you why.)
This One is for My Daughter & Me and TONS of Others....
I rarely (if ever) share personal notes here, but I thought this was a good time to do it considering the last 36 hours. (More on that shortly.) Every year I share an update about my daughter Soleil, which many of you have received by email already. And every year I raise money for one charity in particular: the Crohn's and Colitis Foundation. It is profoundly personal to me, which is why I'm sending this by email and personally requesting that you contribute and to contribute now because through March 10th all donations will be matched so you can double your impact.
(Here are <2min of Soleil in her own words; WARNING: it's adorable❤️.)
Crohn’s and colitis (IBD) have impacted my family for generations. My grandfather, cousins, in-laws, and others have suffered or suffer from the diseases. I was diagnosed with UC when I was 12 years old; and in 2022, my daughter Soleil was diagnosed with Crohn's Disease at age 6. It was devastating to me as her father and also as someone who suffers from IBD as well. Luckily, we have been touched by the extraordinary efforts of the medical community to support Soleil and we have been overwhelmed by Soleil's resilience, strength, and boundless energy and confidence. For the most part, she has settled into good health.
But….
(End of story first: Soleil is fine, but….) Yesterday afternoon, I had the following exchange with my wife as she was accompanying Soleil for her regularly scheduled infusion of Inflectra, a powerful medication that she has been tolerating without incident and had proven very effective….
Rachel:
“Soleil is reacting to inflectra….”
“Lips turning blue.”
“Drs rushed in….”Me:
“Wtf?!”
“Is she ok????….”Rachel:
“Talk later. She’ll be ok. Emergency now.”
“Oxygen mask on….”
“I ran to nurses….”Me:
“Should I come? I can come.”Rachel:
“No.”Me:
“Ok… Hang in baby. I love you….”Rachel:
”Come.”Me:
“Ok coming… Is she ok??”Rachel:
“Sorta…. Pls come…”
“Oxygen. A few hours of observation….”
“Come quickly….”Me:“On my way….”Long story short is that she had an infusion or allergic reaction to the medication. (I was yesterday years old when I learned that infusion and allergic reactions are different; oh, and also frequently indistinguishable.) Shortly after the IV began, Soleil’s eyes started watering, her face flushed beat red, and her lips turned blue. She said the skin on her face felt so tight that she could barely speak or move. The texts I received were scary as hell and I can only imagine how terrifying it was for Rachel and, of course, Soleil to experience this live in real time. Doctors and nurses ran in as alarms blared. They quickly stopped the infusion, gave her an oxygen mask, and administered a small dose of Zyrtec; she was back to “normal” in short order, albeit shaken to the core. Another example of the mind blowing care provided by Boston Children’s Hospital (who have seen this and knew exactly what to do) as well as Soleil’s strength and resilience.
And also another stark reminder that living with IBD also means that we walk on eggshells... noticing her skipping a meal could be a sign of a flare; waiting up at 4am for the latest labs to return; etc. Less than a year ago Soleil had a flare that required numerous middle of the night ER trips. Some days she went to school on 4 hours of sleep because she was excited to finish a writing project. And this week, unrelated to the adverse IV reaction, her bloodwork showed higher than usual inflammation markers so she’ll likely move to another medication (Humira) very soon.
All that said, Soleil is feeling great and has (indescribably) boundless energy and enthusiasm. (See below; my chiropractor owes Soleil a toaster.) She is a fighter; a warrior.
On June 7th, we will once again Take Steps to find a cure and better treatments and support for those living with Crohn's and Ulcerative Colitis (i.e., IBD). Last year we raised over $18,000 and this year we plan to smash that goal. (As usual, Rachel and I will match the largest team donation.) Also, this year our family has been recognized as Honored Heroes and Soleil will take the stage as an Honored Hero to speak on our family's behalf! Here are ways you can help....
Donate today! 🙏
Join our team and raise funds with us.
Share our message with your friends and family.
Walk with us on June 7th.
Together, let's raise funds to support patients in their battle with IBD. The Foundation has invested $500M+ to date and has played a role in every major breakthrough in IBD research. Please help us in continuing to provide critical patient resources, better treatments, and ultimately a cure!
With love and gratitude,
The Levys (David, Rachel, Aden, and Soleil).