From Charlene: Was feeing blah after a stressful day, not feeling well, and a lot on my mind. In walks this smiling, happy face after a full day of school and 5 hours at dialysis. If she can be happy, I surely have no excuse not to be as well. Thanks Mary Ashley for putting life in perspective!💗

perspective

From Charlene: Much needed time with my girls today. So grateful to get to be their Mom.

Mary Ashley and Allison ride around in the mall.

Playing is way more fun than shopping!

girlsday2

Mary Ashley says this is the Halloween costume for Yeti, our good friend Joy’s puppy!

Kissy faces in the hot tub

Starting the day with silly faces and hot tub time

What a sweet surprise to find a message from a precious family last night. I’ve never met them, but they have prayed for Mary Ashley since she was a baby. I can not begin to tell you how uplifting you are and how much your kindness and caring means to my family and me, Nicole and Connie Weber. Sweet Nichole was just 5 when she started praying for MA to get a successful transplant. 

My conversation with Mary Ashley (who never complains):
MA: Momma, please don’t make me go to dialysis tomorrow! I don’t like it, it makes me throw up, my legs hurt, and makes a lot of beeping noise.
Me: Sweetie, I wish you didn’t have to go, but you would get very sick without it.
MA: I want to get a kidney so I can stay home and not get sick 🙁
Me: Speechless and choked up wishing so badly I could give her mine!

Some moments you just have to face that it stinks!!

As summer comes to an end, we wanted to highlight some of Mary Ashley’s summer fun.

summerrecap6

Enjoying a beautiful day sailing through the Charleston Harbor

summerrecap5

Morning hot tub time is always sweet

summerrecap4

Visiting with Mrs. Holmes, who was Mary Ashley’s teacher assistant for several years. Mary Ashley was thrilled!

summerrecap3

On a weekend visit to Grandma’s to take care of Cole. She says his blood pressure is great and he’s going to be well real soon!

summerrecap2

Golf carting! Mary Ashley Barbot sure did put a lot of miles in this summer. Thank you again to all who helped make this happen for her!

summerrecap1

Fun with family at the beach!

summerrecap

Wishes of peace from three sweet girls!

We want to extend our heartfelt appreciation to Christy Daab, Michael Grass, Alfredo Juarez, and Crystal Mistric for being tested to be a donor for Mary Ashley Barbot. Although none were matches, the fact that you tried gives us much hope and inspiration! You are all heroes for trying. May you always be blessed.

Please know that due to HIPPA, we are not aware of the names unless you let us know, but we are so appreciative. Just don’t want anyone to think we are not acknowledging them intentionally.

Fabulous mini-vacation spent at “Give Kids the World”. Every family here either has or is currently dealing with a life threatening illness for their child. Parents with worry lines and well earned gray hair, siblings that face similar struggles, and the wish children see others facing their same realities. It’s an unspoken understanding of each other. While there is a definite serious nature in everyone’s lives, you can put the daily struggles aside, celebrate life and enjoy. The volunteers and creators of this village go above and beyond to ensure nothing but fun and smiles! Thank you for having us back for the day! Big thanks to all of the supporters of Give Kids the World. The joy you bring families is immense.

makeawish25

makeawish24

makeawish23

makeawish22

makeawish21

makeawish20

makeawish19

makeawish18

makeawish17

makeawish16

makeawish15

makeawish14

makeawish13

makeawish12

makeawish11

makeawish10

makeawish9

makeawish8

makeawish7

makeawish6

makeawish5

makeawish4

makeawish3

makeawish2

makeawish1

Mary Ashley recently received a special surprise, and the story was featured on Charleston’s ABC News 4. Check out the link below to watch the video and read the story.

Teen, family hope medical process will make finding a new kidney easier

Thank you to Victoria Hansen and Dave MacQueen for sharing Mary Ashley’s story and trying to find her a matching donor. Thank you to Dr. Twombley and Nurse Lisa at DCI for your care each day, and to Howard and Jan Kirk, Ken and Marge McDugal, and Bruce Klien of Hilton Head Auto for the donation of the golf cart, batteries, repairs, and special delivery service to brighten her days 🙂 Thank you to the many people who have been and are trying to test for her as well. May God bless you all!

From Jan Kirk: This was a special day and I believe it brought a little extra joy into Mary Ashley’s life. The two key principles who were responsible in making all of this happen are Ken and Marge McDougal of Hilton Head, South Carolina. Ken suffered a serious stroke last year and was rushed to MUSC where he received incredible care and excellent rehab at Roper Hospital. He is still making a progressive recovery but has physical limitations on the left side of his body. They were passionate about offering their golf cart to Mary Ashley! That golf cart was Ken’s baby! He was such an avid, excellent golfer. Bruce Klein, general manager of H and H Auto Body in Hilton Head, South Carolina, provided all the detail work, new batteries, personalization, and transportation of the cart up to Charleston. Without these very special and generous people, the golf cart would never have happened.

McDugals

Thank you so much to Ken and Marge McDugal for their kindness and generosity!

The last month or so has been a little up and down. Mary Ashley is fine, doing her hemodialysis 3 days a week. We thought we had a donor that, although wasn’t a match, was a close enough match that we could do a procedure called desensitization (chemo treatments) that would help her match this person. Unfortunately, this did not work out. I know things happen for a reason and it is for the best. Now, the plan is to hopefully find more willing donors to test to see if we can find some one close enough to target a match through this chemo process. Her doctor has gone through a huge list of people that have been tested over the past few years to see if anyone is close enough, and it does not appear to be the case 😥. God bless the many people who have tried!! Thankfully, Mary Ashley is doing pretty well for the moment and we get to love on those sweet dimples every day😍