Albany Take Steps for Crohn's & Colitis

Albany, Take Steps to Find a Cure!

REMINDER: The Chapter's annual IBD Education Seminar is on Saturday, April 20. To learn more about the Seminar & to register for it go to www.ccfa.org/chapters/albany/events

Welcome to the Albany Take Steps Walk!

Sponsored by

We look forward to you joining us on Saturday, May 4 at the Crossings in Colonie

(click on "More Walk Details" above for address & walk specifics)

Join in the festivities!  Food, Fun, Chinese Auction, Kid Zone, Clowns & Characters!

REGISTER TODAY!  WE WALK RAIN OR SHINE!

Introducing our 2013 Local Heroes

Lauren Pronto - In Memorium

I never imagined last year at this time as I celebrated a one year mark of remission from Crohn’s Disease while taking part in the Take Steps walk that a few weeks later my daughter, Lauren Pronto’s, story would begin.  A 21 year old junior who attended SUNY Fredonia who was working on completing a double major in Audio/Video Production and a minor in African-American Studies.  She was a talented saxophonist who played with the Lake George Community Band and even performed on the stage at SPAC accompanying the National Army Corp Band before graduating high school.  While attending college she was a member of the Women’s Blackhorse Rugby team. Lauren’s dedication to her passions was very intense such as the strength and endurance required to train and play rugby. In late April Lauren attended a school field trip to Washington, DC. During the trip she started to feel ill. After returning to school she went to the infirmary and also consulted her primary-care physician back at home. Both parties suspected Lauren may be in the process of passing a kidney stone. As Lauren moved into the first weeks of May and final exams she was displaying more symptoms and it became harder for her to eat due to nausea, abdominal pain and diarrhea. Her father and I drove to bring her home and upon further examination she was hospitalized with the diagnosis of Crohn’s Disease.

After a month of hospitalization and treatment Lauren was released. Her recuperation at home lasted for only a brief two weeks. After returning to our local hospital for several more weeks Lauren was ultimately transferred to Albany Medical Center. All of the standard drugs and treatment techniques associated with this illness just didn’t seem to have an impact. After 13 blood transfusions and four surgeries, one of which removed her colon and left her with an ileostomy, Lauren remained in ICU in a state of non-healing. The protein needed for her body to regenerate and respond was robbed by the disease now being labeled as ulcerative colitis.

In her final two weeks of life, Lauren lay on a respirator still displaying the fighting spirit she demonstrated on the rugby field. A promising young woman who was strong in mind, body and spirit was diminished over a four month period to a shattered shell of what once was. The fierceness of this disease and the complications accompanying it proved to be insurmountable.  On the Sunday morning of August 26, 2012 our beautiful daughter, Lauren, passed away along with the hope of a cure benefiting her ailments.  While a cure was not available to save Lauren’s life, our continuous hope as a family is that one is on the horizon and that her journey  can serve as a foundation for other’s triumphs toward being healed.

I ask that you join our family at the Albany Take Steps Walk on May 4, and raise money for research with the hope that one day there will be a cure so other children and parents do not have to endure what our family did.

Written by Lauren's Mother, Tina Pronto

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Madeleine Howe

My name is Madeleine Howe and I live in Saratoga Springs, NY. I am 12 years old and I just recently transferred to Maple Avenue Middle School. I love the band One Direction. I went to one of their concerts in December of 2012 and feel blessed to be healthy enough to go to the concert when I went through so much when I was younger.

I was diagnosed with Crohn's with arthritis in April of 2008, after a year of several doctors not knowing what was wrong with me. Some thought I had rheumatoid arthritis, because I would have horrible pains in my hips, fingers, and ankles. And some thought I had Osteomyelitis, some kind of rare bone infection. One thing that was persistent about it was my stomach pains. I would have them 24/7. Tums, hot-water bottles, and diet did not seem to help the pain.

Then I started complaining about my ankle. I woke up screaming in the middle of the night. My ankle had swollen up so much; it looked like a hot air balloon!  The next day it was worse. I could not put pressure on it at all. My mom took me to the emergency room at Cincinnati Children’s and they made me stay overnight. The doctor thought I had an infection and performed surgery. After my ankle surgery, the doctor was puzzled as the lab work came out negative for an infection. Some more blood work and a colonoscopy revealed that, I had Crohn’s.  My dad has Crohn’s so we were not as shocked as others might be.

The good news was I finally had a diagnosis; the bad news was they put me on prednisone.  Immediately I started to feel better, but the side effects were hard to handle. My stomach didn't hurt, but I was always hungry. I called it my “puffy time”, because I gained about 20 pounds and my face was like the moon. It was hard for me to control my emotions too. I was often angry.

We moved to Connecticut for the summer, and that's when I met a great doctor at Connecticut Children’s Hospital. He slowly took me off prednisone, put me on better medications, and I was slowly on my way to recovery. We moved to Saratoga Springs and I started 3^rd grade, a little puffy but feeling better.

Throughout the years, I have been able to control my aches and pains somewhat with medication. I hope to never have to go back on prednisone and deal with the puffy time again. I am so grateful for the good medication and good doctors in my life. I still see my doctor in Connecticut for my checkups for Crohn’s and another doctor for arthritis.

Today, I am a happy 6th grader in middle school. I suffer from occasional flare-ups and sometimes diarrhea. I am feeling happier and healthier. I take little medication and I am involved in a research study for Crohn's and Colitis called Telehealth Enhancement of Adherence to Medication (TEAM). For once, I feel normal again, but it would be nice to get rid of the Crohn's for good.

Won’t you join me and my family to raise money for research to find a cure for Crohn’s disease and ulcerative colitis?

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Take Steps for Crohn's & Colitis is CCFA's largest fundraising event and the nation's only walk dedicated to finding a cure for digestive diseases. Participants raise funds throughout the year to find a cure and come together to celebrate the steps taken when no American has to suffer with digestive diseases and Crohn's or colitis. A cure is within our reach yet we need you.

Register today. Join thousands of others in the fight against digestive diseases.

With your support we are committed to transforming the lives of those impacted by these diseases to one of a brighter future based on well-funded, cutting-edge scientific research. Make the decision now to join us and raise funds toward a future free from Crohn's and colitis!