As I sit here trying to clear my mind for bed- I can’t get this sweet face off of my mind. She begged me not to take her to dialysis today 😞. She sat in the car beside me and asked me why she doesn’t have a kidney. She told me, “I really want a kidney because I don’t want to die and dialysis makes me sad with too many needles in me. I want to be able to hang out at home- not in a chair at dialysis!” 💔. I usually try hard to stay positive and be thankful for our many blessings (and I am so thankful) but today made me sad and angry that she has to deal with so much. It is devastating to know her fears are very real and legit and that I can’t make it better. Mary Ashley rarely ever complains, and typically smiles through all she endures, but I suppose it was just a bad day for us both. My sweet Allison stayed at dialysis with her today to help cheer her up 😍. I will never give up Mary Ashley! #whenMommacantfixit #prayingforamatch #tomorrowisanewday
I am in tears watching this video! My sweet friend Tracy tried to give Mary Ashley a kidney and wasn’t a match- that did not stop her from saving a life though. One of the other donors in this 4-person chain, Christina Roberts, was also another amazing lady that tried to give Mary Ashley a kidney and was not a match. She joined this chain. Great story- happy tears!!
Having a hopefully minor procedure today. So grateful for Allison helping keep Mary Ashley entertained (diversion from hunger all day) the awesome medical and nursing staff, and our favorite, most fabulous Anesthesiologist ever! Of course our girl had to add some bling to her anesthesia mask 😍
Allison helps Mary Ashley stay entertained before going in for a minor procedure.
Mary Ashley added some bling to her anesthesia mask
Mary Ashely and her favorite anesthesiologist
To all of the amazing people who have been tested (done labwork) to be a kidney donor for Mary Ashley:
You should be receiving a letter from MUSC any day asking for you to return a release of information form. If you do not receive one please let me know if you would like one.
Explanation: There is a Nephrologist in Los Angeles that has developed many protocols to decrease antibody levels in people who are difficult to match due to high antibody levels. He would like to review the lab samples of the potential donors to see if there is anyone that would have antibody levels that Mary Ashley could be given medications to get her levels closer and match too. In order to review and choose a good protocol they need to look at the labs and, due to HIPPA, they can’t do that without a signed release. If they found someone’s labs that look good, they would then contact you to see if you would still be interested in being a donor, ensure that you are healthy enough, give MA the chemo protocol, then hopefully be able to proceed with transplant.
MA has now been on the list and praying for a matching donor for almost 6 years. This is the most hope we have had in a while.
This does not require anything of you but signing the release unless you are the match.
God bless you all for trying to give her life back to her! Please contact me with any questions and thank you in advance for taking the time to return this form. We are forever grateful!
Mary Ashley has been nominated to be sponsored at the 2018 Jr. Dragsters Racing 4 A Cause! We are so honored and excited to be apart of the event, which will take place at Darlington Dragway on September 29th, 2018. Check out the Jr. Dragster’s Racing 4 A Cause Facebook page for more info, and mark your calendars to come see us there!
From Melissa Rabon:
“Here we go.. we are super excited to introduce to you Mary Ashley Barbot, our 5th Sponsored Kid for this years event. Mary Ashley is 14 years old and lives in Charleston SC. Mary Ashley at the young age of 1 had to have a kidney donated to her, now 13 years later (this past March) she had to have her only kidney removed. To hear more about & to meet Mary Ashley and the other sponsored kids please join us Sept. 29th at Darlington Dragway!”
Fun times with family we rarely get to see. Grateful for blessings in disguise from Hurricane Mathew! Thank you to our North Carolina family for being amazing hosts, and such fun!
It was so much fun to visit our North Carolina family!
Mary Ashley crosses the monkey bars with a little help from Daddy
What a beautiful little lady 🙂
The kids show the grown ups how to dab… and all the other hip dance moves
We found another golf cart! Mary Ashley loved getting to ride
Mary Ashley feeding the chickens and putting them to bed
The kids at Lake Jocassee
Hurricane Matthew has forced us to evacuate to upstate South Carolina for dialysis. We made it and dialysis has started. So far it’s going smoothly for Mary Ashley. Everyone here has been so helpful and friendly! Chip’s family has the other kids playing in the mountains while we get Mary Ashley taken care of, and it sounds like no major damage at our house so far. Hoping the flooding will stop. Many things to be thankful for today and praying for all of those struggling right now.
Everyone was at Grandma’s, so we celebrated Charlene’s birthday a few days early!
Mary Ashley and Nanny
Katey Ann gives Mary Ashley a ride
Katey Ann, Allison, and Mary Ashley with Grandma
Katey Ann, Allison, and Mary Ashley with Nanny