Cooper's Journey

Cooper’s Journey Continues…
First of all THANK YOU to everyone for the prayers over the years for Cooper, we honestly believe without your prayers and blessing from God we would not be where we are today. As many of you know Cooper has been a trooper through it all and continues not to let his diagnosis of these chronic diseases bring him down. To see him in such pain yet wanting to always be the best in everything he does is truly remarkable. As his parents, you all know we will do everything in our power to help our little guy. In general, we are not comfortable asking for nor accepting assistance from others but some friends approached us about a GoFundMe page to help offset several large, upcoming expenses due to new and unexpected developments with Cooper’s health so we agreed to have this page started. Again, thank you does not even seem adequate but please know we are grateful for each one of you!
Brandi and Brad Deas

This GoFundMe is set up to help offset expenses of an immediate trip to Mayo Clinic (Leaving May 8th!) in Rochester, Minnesota as well as the ever increasing costs of Cooper’s medical treatments and care.

Since some of you may not be familiar with Cooper’s story, here is a quick summary of what he and his family have been dealing with over the last 6 ½ years. Since the age of 18 months, Cooper has been diagnosed with 3 chronic diseases by Vanderbilt Children’s Hospital: Cyclic Neutropenia (18 months), Chronic Recurrent Multifocal Osteomyelitis or CRMO (age 5) and Crohn’s Disease (age 8). Despite continued treatment from Vanderbilt, Cooper's symptoms have not improved and he continues to have very painful “flare ups” which even require frequent hospital stays. The Crohn's causes extreme cramping and unpredictable intestinal issues which can require him to miss school regularly. This has also affected his vision which is now causing frequent headaches. The CRMO makes Cooper's bones ache constantly although usually only his parents can tell because he tries his best to keep doing everyday activities despite his pain. As you can imagine, they are constantly searching for answers and possible ways to bring Cooper's suffering to an end.

Remarkably, the Deas were recently presented with a rare opportunity to have Cooper evaluated by a panel of physicians specializing in these diseases at Mayo Clinic in Rochester, Minnesota. In less than one month, Mayo Clinic received Cooper's records and scheduled appointments for him to meet with multiple specialists. Originally set for the end of June, last week the Deas received a call from Mayo saying after reviewing Cooper's records and scans, the doctors feel he needs to be seen as soon as possible and moved his appointments up to May 9-13! While this is a HUGE BLESSING, it has given them very little time to prepare and no time to save money for such a large expense. They are hopeful the doctors may identity any underlying conditions which could be contributing to Cooper's ailments and design a successful treatment plan.

Brad, Brandi and Cooper will be in Rochester May 7th - 13th. This trip alone requires 3 plane tickets, hotel accommodations, food, transportation to and from hotel and I'm sure many unexpected expenses...none of which insurance will cover.

While insurance does cover portions of Cooper's medical treatments, I think it might be helpful to share an insight into expenses NOT fully covered.

Current treatment from Vanderbilt consists of IV infusions of Remicaid every 6-8 weeks at $5,000 per treatment. Research has shown this med has been used to treat both CRMO and Crohn's. Cooper will continue to have bone scans, MRI’s, CT’s, X-rays and MRE’s indefinitely to evaluate his progress. This does not include the expense already accrued from years of testing and treatments. So THIS is why I set up a GoFundMe page. If you would like to contribute in any way (Sky miles, hotel points, food giftcards, money, etc), you would not only help Cooper but also help alleviate some of the financial stress this puts on the entire family. I can assure you the Deas would truly appreciate it.

I will continue to post COOPER UPDATES here as I receive them from Brandi and Brad. To follow Cooper's journey, please click the option below to receive automatic notifications for each update.

Please feel free to share this via Facebook so we can spread Cooper's story.

Links below offer information on Cooper’s current diagnosis.
CRMO
https://rarediseases.info.nih.gov/gard/6108/chronic-recurrent-multifocal-osteomyelitis/resources/1

Crohn's
http://www.emedicinehealth.com/crohn_disease_in_children_and_teens/article_em.htm

http://www.medicalnewstoday.com/articles/265373.php

http://www.webmd.com/drugs/2/drug-16554/remicade-intravenous/details

Feel free to contact Brandi [email redacted] or Brad [email redacted] if you have any questions or would like to contribute in ways other than monetarily.