Mary Ashley did worse through the night- spiking a high fever and increased pain. Unfortunately, they are going to have to remove her dialysis catheter. She will have surgery for that tomorrow after they are able to give several IV antibiotics today. We are so grateful for the prayers. Please keep them coming. Thankful for the fabulous medical team caring for her here!

My how things change so quickly. Great day yesterday and then in the ER this morning after a rough night with Mary Ashley¬†ūüôĀ¬†This is nothing compared to the many other lives in Charleston that have changed instantly after last night’s tragic shooting. My heart is broken for those involed, our city, and our society.

Happy 12th Birthday, Mary Ashley!

From Charlene:¬†12 years ago was one of the most frightening and most blessed days of my life. After months of a very difficult pregnancy, my baby was having fetal distress and I had to deliver her early. Little did I know what a special gift we were getting. I will never forget the friends and family that were there to support us, the prayers that were being said ( my St. Francis family prayed together during the “Blessing of the Hands” service)¬†Mary Ashley Barbot¬†came into our lives fighting from day one! She also had an incredible peace and beauty about her from day one! My NICU friends cared for her so lovingly. Since that day, MaryAshley has continued to fight for her life, but she does it with Grace and an inner happiness that touches everyone around her. I am so honored to be her “Mom” and to get the joy of watching her grow and surpass the many challenges that we were told she may not be able to do. She is full of goodness, life, and hope! She has a spirit that reaches far and wide. Happy 12th Birthday my sweet MaryAshley! Thank you for all of the joy you bring us each and every day and for the many things you have taught us in these 12 years and for all of the people you have brought into our lives! We love you so much beautiful girl.

From Chip: Happy Birthday to my sweet Mary Ashley! Twelve years have been an adventure. You have taught me much more than I have taught you. I look forward to seeing you break boundaries, grow, find a kidney, and enjoy the next 12 years more than the first.

{1% Perfect Timing}

Wow! Just wow! I started reading this and felt overwhelmed with so much emotion and admiration for this lady, Kate Lee. I am so humbled and touched to read these words and to know that you are out there and care that much for my daughter. Your words brought hope, inspiration, peace, and love to me and my family. Then, I thought- wow! I want to be more like You Kate! I want to know that I care that much about others (even those I have never met) and will be able to give someone else the inspiration, love and support, and even an organ just because I care and trust where I am led! Thank you Kate for these amazing words, and for your efforts to save my little girl! I am sharing for others to read. I know they will be as inspired as I am! Many blessings to you and your family!

Kate also wrote about Mary Ashley a few weeks ago. Click here to read her first post, {1%}.

What a blessed day! Thank you to all who shared Mary Ashley’s story! It works miracles. I have had 5 calls from some amazing people willing to be tested! We are so thankful, hopeful, and humbled. God Bless you all! Today brought so much hope and inspiration to our family!

Please pray that Dialysis goes well for Mary Ashley Barbot tonight. She has really had some ups and downs lately, and we are trying very hard to keep her out of the hospital this week.

Did the Kidney Walk today with some fabulous folks! Thank you for walking even in the rain! We are truly blessed with great friends!!

We were able to spend some quality time with Carol Stukes, Taylor Stukes, and Carol-Gray Stukes today- they had no idea how much we needed that ray of sunshine. Taylor ran in the Lifepoint Race

Posing for a photo during brunch on Shem Creek

Posing for a photo during brunch on Shem Creek

Taylor and Mary Ashley with Chance

Taylor and Mary Ashley with Chance

Mary Ashley performing a stunt!

Mary Ashley performing a stunt!

Mary Ashley cheering!

Mary Ashley cheering!

Lifepoint Race for Life 5k, Feb 28, 2015

Lifepoint Race for Life 5k, Feb 28, 2015

Taylor and Mary Ashley hugging at the finish line

Taylor and Mary Ashley hugging at the finish line

Everyone posing with Chance, Donate Life SC's mascot, after the race

Everyone posing with Chance, Donate Life SC’s mascot, after the race

for Life 5k this morning, we enjoyed a delicious brunch RB’s, and then we all got to watch Mary Ashley cheer! It was a great day.

Several people have asked me lately for an update: Mary Ashley continues to do peritoneal dialysis at least 12 hours a day. It is going well enough to continue, but still quite a challenge some days. She has a fistula and gets monthly Iron infusions through it. She, as always, has a great attitude and gives everyday 200%. Because of that, and her fabulous nurse, Sharon Maralit, she goes to school most days by 10am, and loves it. We have been blessed with so many who have tried to donate, but we still do not have a match for a kidney. She has 3 amazing partners in the national exchange, but still no match to the over 350 donors that offers. We are still praying that there is someone out there that will match. While not limited to this, there is a theory by her doctors that a Hispanic donor may be a closer match. That is based on her antibodies. March makes 2 years on dialysis. Please feel free to share and if anyone is interested in being tested, please refer them to me or the Donation Information page here. Thank you all for your love and support!

Today is the ninth anniversary or Mary Ashley’s first kidney transplant. At that time, she was 20 months old, in ICU, and hanging onto life by a thread! A very special young man lost his life that day and we grieve for him and his family always. Through his tragedy, he saved lives because he and his family chose organ donation. He is a hero beyond measure! We are grateful to him and his family each day we see our precious girl smile and laugh. Though this kidney is failing now, it is the reason we have had Mary Ashley with us and still have her today! Mary Ashley truly loves her life, family, and friends and lives it to her fullest abilities! So today, I thank God for this young man, his family, as well as our family, friends, medical team, and community that have supported each of us. Many people have been so generous, kind, and compassionate. They have celebrated the good times and carried us through the bad times. We are so blessed by the wonderful people we have met on this journey and for the opportunity to witness so much goodness in this world!