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Will's Road to Wellness 2016
Posted on March 22 2016
I assure you this page isn't a fundraiser for something frivolous.
Have you ever had a bad case of food poisoning? Do you remember the feeling? The cramps, the pain, the vomiting, the gas, the frequent trips to the bathroom...Eventually, the discomfort goes away. You feel better. Life goes back to normal.
Can you imagine living every single day of your life with the pain, cramps, bloody stool, gas and fatigue?
That's my reality. Mine and my 13 year old son's.
There is no cure.
I've lived with the symptoms for years and I've been diagnosed for 7.
Will has been diagnosed and treated since August 2014. He went from a healthy 138 pounds down to a scrawny 88 pounds in a matter of months. He was trying to hide his symptoms from us but I already knew my fears of him having Crohn's were coming to light.
We also both have Beta-thalassemia. A blood disorder that causes the blood to not absorb iron causing extreme fatigue and a decreases immunity.
Our treatment costs roughly $15,000 a year after what my insurance covers. It's one of the most expensive medical conditions to treat. Will responds well to Remicade. (a biologic infusion done at a chemo center costing roughly $15,000 monthly)and absolutely loves St. Joe's Hospital in Tampa where it is administered. Problem is, we can't keep up with continuing the costly co-pays and switching him to another medication may cause him to develop anti-bodies and get sicker. I am on Humira after not having success with other treatments. (roughly $500 after co-pays) I had 8 inches of colon removed in April 2014 and the surgeon stated that it was the most inflamed intestine he'd ever witnessed. Being on the Biologics so long also caused me to develop multiple cysts with lesions in my right breast. I had surgery to have them removed in February 2016 and thankfully all was benign. I have lived for 2 full years working full time while in pain and vomiting daily causing a 60 pound weight loss but my main concern is Will's quality of life and I would hate to remove him from a medication which seems to be working well. He's still a trooper though! Just look at that goofy face in the picture. He never complains and is the most thoughtful, funny kid I know. (I might be biased though!)
We are a middle class family. My husband and I both work full time. We have 2 teenage sons and all the expenses that come along with it. We do our best to stay afloat and live within our means but frankly, some weeks it's impossible to work a 40 hour work week between illness flare-ups, medical appointments, lab requests, ultra sounds, MRIs, colonoscopies, blood work and medical paperwork.
I have never pictured myself asking for donations for my family but if folks can part with $1 here or there to help someone purchase new boobs or designer purse I figure why not? We have an actual medical need and you can get cool jewelry to boot!
We sincerely appreciate your generosity with our cause and if you can't make a purchase, that's o.k. All we ask is that you share our story.
To read more about Crohn's disease click here:
Be Brave Stretch Bracelet
Original Leather Bracelet
Braided Leather Bracelet
The Anniversary Collection
Be Brave Gemstone Cuff
Encouragement Cuff - You are braver...
Encouragement Cuff - Stay Strong
Encouragement Cuff - Be Brave
Signature Bar Bracelet & Necklace