The Best for Brayden

$3,780 of $7,500 goal

Raised by 90 people in 40 months
Brayden was just diagnosed over Christmas with a rare auto immune disease called HLH and MAS, which almost took him from us. It was asked of the family to set up this page to help with some of the expenses incurred in the hospital stays ahead and gas expenses to get to and from the many specialist visits. Thank you for your time. Love and light to all.
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Second day of cards in the mail for my little guy! 24 of them today!!! He is loving life right now. We all did an interview with 104.5 THE BLOCK radio station today that will air on Sunday morning. I love that he is touching so many lives. Thank you to everyone who has taken the time out to send Brayden a smile! It means so much!!
Day 2 of cards! Thank you!!
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Brayden made his request for Christmas cards from our community via a story on our local FOX news TV station and just 2 short days later he gets 7 cards in the mail from people wishing him well. As his mom, to see his face BEAM when he opened the mailbox today and then shriek with glee, I can not thank everyone enough for causing that elation!!
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Been a good while since I gave an update, so here goes. This summer will be full of appointments and tests. He will be having 2 different MRI's done on his spine (one with contrast and one without) and a CT scan done on his right shoulder with the Sprengel's deformity on June 22nd. The spine MRI's are to determine if his spinal cord has re-tethered or if there is an infection in the cavity of the sacral dimples that Brayden has on his lower back. If he has indeed re-tethered he will need another spinal surgery to correct the issue. This surgery almost took him from me 3 years ago, so I am asking to be flooded with prayers that we do not have to go through that again. He also has a ton of testing and a few surgeries to go through down in Charleston at MUSC Children's at the end of July to definitively diagnose him with CIP (Chronic Intestinal Pseudo Obstruction). Once we have a definite diagnosis we can finally discuss our options for moving forward and what type of ostomy will benefit him and his future the most. We also found out today that he will need a very extensive surgery on his right shoulder to correct the deformity that he has had since birth. It will require 2 orthopedic surgeons to be in the O.R. at the same time as it is very involved and risky as they do not want him to lose all function in his right arm by damaging any of the nerves. They basically have to disassemble his shoulder and then move everything into its proper place. The incision will run from his C1 vertebrae down to the T9 vertebrae and also may have to detach his clavicle as well which would be a separate incision in the front. The recovery will be long and painful, but the outcome will be of great benefit to Brayden and his quality of life. Once all of that is complete, he will also need surgery don e on both of his feet to remove some of the bone on each of his big toes and release the main tendon and reattach them in a different spot to ease the tension that is being put on that joint. But that will be a little while down the road, as it does not need to be done immediately. We ask that you please keep us in your thoughts and prayers as we venture through all of this. I will keep everyone updated as I know dates of procedures or any further information. Thank you for taking the time to read this update on my little trooper. We truly appreciate each and every one of you. We send much love to one and all.
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Haven't updated in awhile, so here goes. Brayden just had a catheter placed yesterday as he is having adverse effects from the bladder procedure he had on December 22nd (his 82nd surgery to date). The output results from this catheter will determine whether or not he will need straight cathed every 4 hours at home by me. His output is showing more than what he takes in via his TPN through his central line, so that is concerning. We return to urology for the third time this week to hopefully have a final decision made. He had an ultrasound also this week and it showed that even after releasing, he still is holding urine in his bladder. It also showed that he has inflammation in his intestines, but that is his norm unfortunately. And lastly, it verified the enlarged liver that his oncologist palpated last week. Regarding oncology and his HLH, the doctors believe that they misdiagnosed with secondary HLH and now,think that he has Familial HLH. The only treatment for this is Chemotherapy to completely knock out his immune system and then bone marrow transplant. He had a lot of blood work sent to Cincinnati Children's Hospital for testing and we should receive the final results at his next oncology appointment on February first. My boy smiles in the face of everything he has to endure, and I see that as a huge blessing. We sincerely thank you for your constant love and prayers as we continue to fight this crazy battle. Much love and hugs to all.
Always with a smile...
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ND
Natalie Dawn
17 months ago

I would like to know if we wanted to donate some gifts if those could be sent to the same address?

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Melissa Powell
16 months ago

Praying for you Brayden!! Do you have a FB page set up? I'd love to follow your story!

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$3,780 of $7,500 goal

Raised by 90 people in 40 months
Created December 30, 2014
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TB
$100
Trey B
16 months ago

Stay strong Brayden, God loves you and I know you will overcome, will be keeping you in my thoughts and prayers

BS
$10
Brendel Styles
16 months ago

Stay brave, and I will keep you in my prayers!

$40
Anonymous
16 months ago
RJ
$20
Rodger Jezowski
16 months ago

Brayden, My family was touched by your story. I know this isn't much but we hope it helps your family out. We are keeping you and your family in our thoughts and prayers. We hope you enjoy our Christmas card as well as all the others you get. Merry Christmas and God Bless! Sincerely, The Jezowski Jr. Family

AE
$5
A Erwin
16 months ago

I hope you get a lot of Christmas cards this season!! :)

$100
Anonymous
16 months ago
DN
$30
Dana Noonan
16 months ago

What a brave boy you are Brayden. Bless you and your family!

ND
Natalie Dawn
17 months ago

I would like to know if we wanted to donate some gifts if those could be sent to the same address?

+ Read More
Melissa Powell
16 months ago

Praying for you Brayden!! Do you have a FB page set up? I'd love to follow your story!

+ Read More
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