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Everett’s Story

Site created on April 10, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting!

“May 9th will forever hold a special place in our hearts. Everett Allen Roberson was born 4:37am 7lbs 3 ounces 20 inches long. Mommy and daddy love you little man,” quoted Jake Roberson, father of our brave little warrior.

The day after Mother’s Day, May 9th, 2016, we were admitted to the hospital to deliver and bring home what we expected to be a healthy little boy named Everett Allen Roberson. Unfortunately, that wasn’t the case. He wasn’t as healthy as was we hoped, nor did we get to bring him home until he was a month old. From that point on, we faced many obstacles and many firsts with our second child that we did not encounter with our first child, Adeleigh.

After days, weeks, months of antibiotics, transfusions, and testing we received scary, yet relieving news. Everett was diagnosed with Wiskott-Aldrich Syndrome (WAS) in July 2016 at 8 weeks old. Scared for what was to come, relieved to have an answer. There were many doctors visits, many questions, and many unknowns… all of which, as young parents led to question “who, what, when, why” in hopes to make the right decision for our little miracle.

Before writing about one particular doctor’s, visit this is the most common question we get as a family: "What is Wiskott-Aldrich Syndrome?”

Wiskott-Aldrich Syndrome (WAS) is a challenging disorder affecting 4 out 1 million boys worldwide. It affects the cells of the immune system, the body’s defense against infection, and platelets. Platelets are the blood cells that help prevent excessive bleeding—this particularly being the major components we battle with Everett. A normal platelet count ranges between 150,000 – 450,000, where Everett’s typically range between 14,000 – 16,000, which puts him at an increased risk of bleeding with simple activities for a two-year old. Individuals can also present with eczema, as well as being at a higher risk for developing autoimmune disorders and certain types of cancers. For more information about Wiskott-Aldrich Syndrome please see the direct links added to our page.

Now, back to the one particular doctor’s visit, the doctors explained different treatment options for Everett. With one of those being a bone marrow transplant. Although this treatment is the most invasive it is a cure to our son’s disease. In the same sentence the doctor said, “a sibling would his best match, however there is only a 25% of that being possible.” With hesitation, we asked ourselves, “do we put our three-year old daughter through a life changing event?” As parents it challenged us to now be advocates for both our son and daughter. We pushed and pushed for what seem to be months to have HLA typing and WAS carrier testing done for Adeleigh.

July 6, 2017, impatiently waiting for results, God came through answering the prayer our family wanted to hear: "ADELEIGH IS A 10/10 PERFECT MATCH TO EVERETT, AND SHE IS NOT A CARRIER OF THE DISEASE."

After that call, but this time no hesitation, we decided it was time we find the facility and transplant team who were ready to take on the role of curing our son, by letting his sister be his advocate donor!

The day after Mother’s Day May 14th, 2018 Everett will be admitted to Centennial Children’s Hospital in Nashville, TN to begin his journey of fighting against a disease that W.A.S. (Wiskott-Aldrich Syndrome) but no longer will be!

In Adeleigh’s words, “I get to fix bubba.”

Alone we are rare, together we are strong! Please join us in supporting our little man by exploring our “Ways to Help” link above or following/donating at:

https://www.caringbridge.org/visit/embraceeverettsjourney (https://www.caringbridge.org/visit/embraceeverettsjourney )

https://www.gofundme.com/embraceeverettsjourney (https://www.gofundme.com/embraceeverettsjourney )

https://www.bonfire.com/embracingeverettsjourney/?utm_source=facebook&utm_medium=campaign_page&utm_campaign=embracingeverettsjourney&utm_content=default

FirstBank: “Everett Roberson Fund”: direct deposits can be made to any FirstBank location mailed to: FirstBank 101 East Main Street, Henderson, TN 38340

Above all else we appreciate and request your prayers!

With love,

The Roberson’s

Newest Update

Journal entry by Everett Roberson — Nov 12, 2018

Everett update!

God continues to watch over our little boy and family giving us great news each time we go for clinic visits! Again, clinically Everett’s labs looked great on Tuesday 11/6. Platelet count of 2️⃣1️⃣1️⃣

On 11/7 we started tapering his Prograft medicine. This is the immunosuppressant medicine. Each Wednesday of every week we continue to decrease his dose. With this, we still have to watch for chronic GVHD (graft vs host disease). Chronic GVHD can occur anytime post transplant, typically within the first 5 years post transplant being at higher risk. The overall risk of developing chronic GVHD is 30-40%. It can occur in the joints, eyes, skin, mouth, stomach. The doctors will do range of motion test to watch for it in Everett’s joints, and we will closely monitor any other developing symptoms from home.

Superman and Wonder-woman had a great Halloween this year! This was the first year Everett was able to get out and celebrate outdoors!

Adjustment at home are mostly all back to normal except for sleep still. We have tried just about everything. Nights are long with the kiddos and hoping we get out of this phase soon!

Everett was evaluated for special needs services. He scored below average in a few areas so he will start seeing a developmental therapist and a speech therapist this to help him overcome obstacles for him to strive forward with his personal and daily needs.

Thank you for continuing to follow along our journey 🙈

The Roberson’s 💙

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