• About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
    • Awards
    • Careers
    • RPV Store
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • Testimonials
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Patient Advocacy Team Outreach
  • Clinical Trial Recruitment
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies

Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
    • Awards
    • Careers
    • RPV Store
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • Testimonials
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Patient Advocacy Team Outreach
  • Clinical Trial Recruitment
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies

Helping patients and caregivers share their voices

Weekly Warrior: Meet Coop

April 29, 2022 Laura Mullen

“By the time Coop was just a few months old he already had many surgeries under his belt. After the biggest of them, open heart surgery, the attending warned her med students that Cooper was throwing the complications manual at them. He finally came home after 5 weeks, surviving a septic infection, heart block, and needing a second surgery to place a permanent pacemaker.
He continued to test his doctors when at just 2 years old he was diagnosed with Crohn’s disease. And it turned our world upside down. We had handled Down syndrome, feeding issues, g-tube surgery, and open heart surgery; but Crohn’s by far would be the greatest hurdle to overcome.
Cooper spent years in and out of hospitals. So many failed meds. Daily pain and tears and tummy aches. Missed school and holidays and more pokes and hospital admissions than we can count. It was heart wrenching. Then at the age of 11 our 39 pound very very sick child was given a g-tube for the second time in his life, and an ileostomy. We thought it was the end of the world, but it was a new beginning.
Coop has been able to gain weight and grow, he no longer has daily pain, and he’s such a changed kid his siblings said he’s “Cooper 2.0.” Of course, ileostomy and g-tube life isn’t all rainbows and roses, but thankfully life is so much better for Coop with them. He still receives Remicade to keep things at bay, but now it can actually work to keep his Crohn’s quiet with his diseased colon out of the picture.
We are so thankful for parents and patients that have gone this road before us. (Although we wouldn’t wish Crohn’s on even our worst enemies). We learned so much about meds and doctors, tubes and ileostomies… And we are never alone with such a vast community of experts to lean on.”

Filed Under: Patient

Latest Blog Posts

  • Who Are RPV’s Clients?
  • How Quickly Can RPV Recruit Patients? Wes Michael Explains
  • Meet Our Team: Sara Prosic, Business Development Associate
  • Wes Michael Talks Empowering Patients Through Research
  • Meet Our Team: Mirza Rakovac, Helpdesk Specialist

Check out our YouTube Channel

https://youtu.be/cfjkqh5Ykp0

Read Our Newsletter

Read our Newsletter
What’s New at Rare Patient Voice?

Rare Patient Voice

711 Hampton Lane
Towson, Maryland 21286
ContactUs@RarePatientVoice.com
(443) 986-1949

Regular business hours are Monday through Friday, 9am-5pm ET.

Careers


For Patients

  • Learn about us
  • Vision, Mission and Core Values
  • Sign up to participate
  • Find us in the community
  • Read our blog for patients
  • Privacy Policy

For Related Groups

  • Interested in Becoming a Referral Partner?
  • Are you a researcher?
  • Read our blog for businesses

Visit RPV on Facebook Visit RPV on X Visit RPV on LinkedIn Visit RPV on Instagram Visit RPV on TikTok
Visit RPV on YouTube

Intellus Worldwide logo   Insights Association Member Logo  BHBIA Corporate Member logo

EPHMRA Agency Member logo ESOMAR logo

GSA Member logo

CIRQ 27001 certified logo Rare Patient Voice, LLC, Market Research, Towson, MD

Rare Patient Voice, LLC, Market Research, Towson, MD

©2025. Rare Patient Voice. All Rights
Reserved. Privacy Policy | Sitemap

©2025 . All Rights Reserved.

Copyright © 2025 · Genesis Framework · WordPress · Log in

Search Our Website

We use cookies to ensure the best experience with Rare Patient Voice. By clicking “Accept”, you agree to our privacy policy.
Privacy Policy   |    Cookies    |    Accept
Manage consent

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled
Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
Functional
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
Performance
Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
Analytics
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
Advertisement
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
Others
Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.
SAVE & ACCEPT