Dear Family and Friends,
On July 20th, I’ll be running my second half
marathon in honor of Ayla, my tenacious 3-year-old daughter who has struggled
with Crohn’s Disease since she was 6 months old. As of now, there is no cure for this debilitating disease and the
current drug therapies carry many scary risks.
But in the two years that I’ve been paying such close attention to
medical science, I’ve witnessed some tremendous strides in research that brings
big hope to our family. Much of the money
that pays for this research comes from the Crohn’s and Colitis Foundation of
America (CCFA), the foundation benefited by my half marathon.
Ayla’s symptoms have included severe pain from hundreds of
intestinal and oral ulcers, vomiting, chronic nausea, diarrhea, bloody stools,
horrific body rashes, unremitting fatigue, and for a time, the inability to
walk. A cocktail of drugs, including
Imuran (a chemotherapy), Remicade (an immunosuppresant) and antibiotics (a gut
flora terrorist), have had her Crohn’s largely under control now for 8 glorious
months. We’re grateful for the state of
comfort that her therapy regime brings, but we’re tremendously fearful of the
accompanied risks of serious infections and cancer.
Despite the absence of her Crohn’s symptoms,
Ayla has still spent a tremendous amount of time in the hospital over the past
several months. After too many painful
pokes to count, xrays, and a surgery to have her port-a-cath (central line)
removed, we discovered she had pneumonia.
Her compromised immune system was definitely at the core of this
illness, which is why we need better treatments and a cure for Crohn’s
Disease.
As the Team Challenge fliers boldly
claim, last year’s half marathon was LIFE CHANGING. On race day I was met at the finish line by my smiling, cheering,
sign-holding family and friends. The
flood of emotions was tremendous and it brought me to tears. During trainings, I connected with people
who ran furvidly despite struggling with Crohn’s or Ulcerative Colitis. They helped reframe my view of our
situation. I began to see that my
family and I don’t have to live our lives as helpless victims to Ayla’s
diagnosis, and fundraising for CCFA is a way to actively participate in finding
a cure. As Ayla’s mother, and an advocate
for all those with these diseases, I am fired up to seek answers and find
solutions.
Please
help me find a cure for Crohn’s Disease and Ulcerative Colitis by donating in
whatever capacity you can, and by passing this request along to others. Over 80% of your dollars go directly to
research, and I assure you, big things are happening in genetics and microbiome
research that will lead to a brighter future for Ayla!
As you all know, this has been an
unbelievably rough road for us. The
support that we’ve gotten from you, be it emotional, monetary, or culinary, has
been THE thing that has gotten us through.
Our ability to stay focused (mostly) on silver linings is entirely a
result of the love and support we receive, in all of its forms. Please know that your donation is not only
helping to find a cure, but it’s helping our family stay positive and strong,
and we are INFINITELY GRATEFUL for that.
Your
tax-deductible donation can be submitted on my fundraising webpage at http://online.ccfa.org/MenoReiner. All donations must be received by July 8th.
Steve,
Jonah, Ayla and I thank you for your support, and wish you wellness beyond your
wildest dreams.
All
my best,
Meno
Reiner
