Thank God we are going to be blessed with such good weather! Dress accordingly and don’t forget the sunscreen (yes, even though it’s early March!). Here are a few items to note before arriving tomorrow:
- All volunteers please arrive between 12:45 and 1pm for set up
- All participants, registration is 1-2pm
- Order of events: 2pm Welcome, 2:20pm Games begin!, 3:10 Groups swap (Indoor/Outdoor), 4pm Closing Ceremonies
- We may have actual Tough Kids present, so be prepared to treat them as they heroes they are!
- We are finalizing refreshments but feel free to bring whatever you need.
This will be a great day, and we appreciate your support and encouragement! A special thanks to the Calera High School Ladies Softball Team and Coack McCrackin for volunteering, Chelsea High School for soccer balls, Alabaster City Parks and Rec for various sports supplies, the YMCA for support and venue space, and Evangel Classical for promotional assistance!
Here is the video of the @DaytimeAlabama sharing Bryan’s Story and One Tough Kid Day and Tournament. Thank you to Wendy Garner for sharing the story.
Thank you Mike McClanahan @MikeCBS42 for capturing the essence of One Tough Kid and Bryan’s story.
REGISTER, REGISTER, REGISTER!
Only one week left until the Tough Kids Tournament! Because we are equipped for a limited number of participants, please make sure you register soon to secure your child’s place.
This tournament will be a blast! Here’s a list of some of our competitions: basketball shootout, YCross relays, Wii competitions, soccer shootouts, strength challenges, and more!
Be sure to arrive between 1-2PM to pick up your registration packet.
And, don’t forget! March 2nd is Tough Kids Day! Remember to wear blue and honor any Tough Kids you know!
Marina Noelle Hall was born Nov 22, 1994 in Poltava, Ukraine and spent most of her years in an orphanage. She was adopted in 2009 and lives in Birmingham, AL. She has 5 sisters and 4 brothers. She is a college student and has worked part-time with children at Covenant Classical School. She is the proud owner of a Great Dane named Maverick and a cat named Mia.
Marina Noelle was one of four teenage passengers in a tragic car wreck on September 13, 2013 near Chelsea. The driver was killed upon impact. Marina Noelle suffered multiple broken bones throughout her body, compound fractures, brain
hemorrhaging collapsed lung, as well as some memory and concentration loss. Her right leg was almost amputated. She has been on a journey of recovery with multiple surgeries, an Illizarov external fixator to support new bone growth and stability to save her leg and therapy to regain the ability to walk and range of motion on limbs. God’s hand on her life and the progress to this point has been very evident. She continues to rely on God’s strength for each day’s challenges as well as the future ahead.
She stayed in the hospital the first 8.5 months of her life. The majority of that was in the ICU, literally on her death bed. She actually had to be revived twice. The ventilator saved her life yet did terrible damage to her lungs at the same time. She has numerous diagnoses, but lung disease & bronchial/trachial malacia are the major issues that make her ventilator dependent. We were told that she would not survive if we took her home from the hospital, but we decided to take that chance and take a huge leap of faith. We were also told that if she did survive she would most likely not have any kind of quality of life due to such high oxygen requirements and her oxygen stats staying so low so much and because of all of the drugs that she had to be given. They said time would tell if she would ever even TRY to talk, crawl, walk or anything! We were told she would not be able to talk because she could not tolerate using a Passy Muir Valve (which hooks to her tracheotomy to help a tracheotomy patient speak), however she was determined to be heard and participate in conversations without the valve and now she talks our ears off. You can understand 85% of it perfectly, the other 15% is difficult to understand just because she has a tracheotomy and all of her sounds don’t come out correctly.
Physically we were told she might not walk. Although she has very poor muscle tone, She walks everywhere, with the assistance of her AFO’s that have twista cables on them to help her hip rotation!! Now grant it she limps and has external hip rotation and leg/foot pain that comes along with walking, but she is determined to keep up with all her siblings. She doesn’t realize she’s different. This is normal to her since it’s all she’s ever known. In the video she is at physical therapy at children’s hospital. Although she walks well, for her, they put her on the treadmill to try to build up her endurance. She doesn’t have much endurance at all and when she does get to go out she mostly is in her power wheelchair. She gets intensive physical therapy during about 8 months of the year. She cannot go to outpatient therapy from October thru January usually, because of germs and cold weather & generally those months are just much harder on her lungs. She stays most sick during that time and those are also the months she has frequent hospitalizations. She takes 20+ medicines a day and numerous nebulizer breathing treatments as well. She’s has had too many surgeries to count. She has been put to sleep well over 100 times. She has been transferred to Vanderbilt and Cincinnati Children’s Hospitals for second opinions because her doctors have never treated a child with her issues and as complex as hers. There truly is NO earthly reason she should even be here much less doing the things she is doing. She has had two major lung surgeries within a year and functions on very little lung capacity. She only has 20% of her right lung remaining and on the left lung she has only 50% of the top lobe and 70% of the bottom lobe remaining.
Often I have people ask me “How do you do what you do?” The human side of me gets down and out sometimes and I admit I have thought “Why my child?” As parents we want to fix everything and it hurts me to see my child suffer like she does, but then on good days and to see her in that video I am reminded how overly blessed I am. Even on the worst days she is still here with me!! That is my biggest blessing and so we do what we have to do and we do it by God’s grace!!
I remember vividly praying, in the ICU waiting room the first time she coded, “Please God, don’t let me lose another child” (we had a precious stillborn, Malachi, two years before I had Gracie) and then it was like a calm came over me and I truly realized for the first time ever, I think, that God loves her FAR more than I could ever fathom. Then I quickly shifted my prayer and I prayed “Please don’t let her suffer more than necessary just to keep her here with me. She is Yours, Lord. Please take her now, if that’s Your will.” By far, that was the hardest prayer I have ever prayed, but it took that day to truly make me realize I have only been “loaned” all of these precious kids I have!
Gracie truly is a modern-day miracle. She remains a very critically ill child and has a long road ahead of her, but by GOD’S awesome grace we continue to walk this road with her, the road that HE has already gone down before us!”
Most recently, in January, we were told that the time had come that we needed to be referred to Texas Childrens Hospital in Houston, to be placed on the donor list for a double lung tranplant. Currently we are in the process of getting financial consent for her to be treated out of state. When financial consent has been obtained, we will go to Houston for a 1 week period for testing, interviews, information, etc.. During this time we will also be looking for a place to live. Gracie and I will have to actually move to Houston and be residing there before they will place her name on the donor list-because we will be assigned a beeper and we have to be able to be at the hospital within 1-2 hours of receiving the word that lungs have become available. We have just begun down the road of fundraising and are trying to bring awareness to the events being planned. Gracie’s daddy, along with my mom, will stay behind with our other 4 children. We cannot begin to fathom the expenses of being financially responsible for 2 houses, double the bills, traveling expenses, etc..
More importantly we are tyring to raise awareness of Gracie’s health concerns, so that more people will be praying for our sweet miracle. We have a super long road ahead of us.
If you want to, please include her Caringbridge website. That way people who want to keep up with her progress or who want to know how to pray specifically, can keep up with her at www.caringbridge.org/visit/gracieannpoole<http://www.caringbridge.org/visit/gracieannpoole>. She also has a facebook page for support and info on fundraising efforts, it is “walking by faith with gracie”.
Thanks for considering sharing Gracie’s story. I love to hear how Gracie’s life blesses others. I often think, that is why she is the way she is, to show GOD’s amazing mercy and grace. It makes my heart smile to hear how many lives she has touched. GOD IS GOOD!
Our sweet Addison was born in March 2008 with a genetic disease called ARPKD (Autosomal Recessive Polycystic Kidney Disease). This disease affects other organs besides the kidney. With Addison, this disease really affected her kidneys and liver in the worst ways possible requiring transplant for both of these organs if she was able to survive her birth and all the problems this disease would create. Early on we knew God was watching over Addison’s life and guiding us through an amazing journey with her. Ultrasound doctors kept answering our questions with “not for this child” when we first found out about her illness when I was 28 weeks pregnant. But 6 years later, and multiple problems, physically – mentally – emotionally, our family has witnessed God’s hand on her life and we feel fortunate to love her, protect her and guide her to become as independent as possible for as long as we are blessed to do so.
Addison’s kidneys did not work at all at birth. Three days after she was born both kidneys were removed and a feeding tube was inserted. The kidneys were enormous in size making her stomach huge with this causing difficulty in breathing. She was diagnosed with bronchial pulmonary dysplasia because of the kidneys not working in utero, too. Ventilator was required for the first 3 months of life and many times as she has gone in and out of the hospital for various surgeries. In addition to having her kidneys removed, Addison underwent surgeries to prepare her for dialysis. This included hemo-dialysis port, peritoneal port and depo ports. Addison’s first couple of years was in and out of the hospital, many times with dehydration and fevers. At one year of age she underwent a shock after having a particularly hard time getting blood pressure and fluids stable. Doctors gave us little hope of survival; and we didn’t see them for 10 hours while they worked tirelessly to stabilize her. But, her strong spirit prevailed; and although she had a long road ahead to return to her normal, she did. Addison’s doctors were the first to admit that Addison had a better doctor than they were watching over her. Her illnesses were always complicated by the fact that she was on peritoneal dialysis. We did the dialysis at home and was able to get it down to 10 hours each day. We were able to get services through Hand-in-Hand with Shelby County that provided physical, occupational and speech therapy at home. These therapies helped, but progress was slow. Addison’s exceptionally large liver caused her stomach to be so large, she looked 14 months pregnant – which in turn, caused difficulty moving around and staying balanced. Also, it was difficult to keep her fluids at a perfect level which caused additional problems. Throughout all this, Addison kept working hard doing very basic tasks.
Addison started sitting up alone at 20 months of age. This was a turning point for her – opening up her world and making her so inquisitive. She never crawled; but scooted on her bottom everywhere to get around. She was able to get a kidney transplant (from her dad) when she was 2 1/2 years of age. Kidney transplant went well, but she was unfortunate to have to return to surgery three times after this one week after transplant surgery due to bowel perforations that happened during her initial surgery. She was in the hospital for 6 weeks during this period – going back and forth from Children’s to UAB and back again. Addison continued to be a blessing to those surrounding her – doctors, nurses, aides, patients – as she would wave and smile as though she didn’t have a care in the world. Around this same time, we realized Addison was having problems with her eyes crossing. Eye doctor diagnosed a condition that required eye glasses which she wears and continues to do so as though they are a part of her body.
There are so many times that Addison has to be hospitalized that it has become hard to keep up with them. She had a tonsillectomy, hernia repair, biopsy of lymph nodes, and multiple tests that required overnight stays. She was in the hospital 9 times in 2012 due to random fevers requiring IV antibiotics. She was diagnosed with Cholangitis that requires intermittent antibiotics. She also was diagnosed with esophageal varices which has gotten so severe that she has been put on the Liver Transplant list. Multiple medications are taken. Addison eats very little and will not drink liquids for the most part requiring feeds through her feeding tube. We put her on continuous feeds throughout the night and bolus feeds during the day.
In October 2012, Addison started walking independently. Her legs are still really small and short. Before she started walking independently, she walked with the help of molded braces on her feet/legs as well as a walker that helped her feel secure. She still likes to hold our hands on surfaces that are not level; with her big tummy it’s hard to keep her balance at times. Addison has enjoyed 5 year old kindergarten this year being in a class with her peers enjoying her life with help from aides and fellow students. She realizes that she does some different things (still wears diapers and having to have feeds through feeding tube); but she does not see that as a problem. Her normal is a little different. Her family and friends allow her to push the boundaries of doing all things that she can do and trying new things. Addison has limitations; but accepts this and enjoys her life to the fullest.
In November 2013, Addison experienced a septic shock (again). This time was caused by a 105+ fever caused by an infection in her blood stream. She was put on a paralytic and ventilator. For 2-3 days we were not sure, as were the doctors, that she would be able to pull through. She displayed again her strong will to live. Her transplanted kidney quit working, dialysis catheter was inserted in her leg to cleanse the toxins, fluids began, feedings stopped, blood clot formed at dialysis site, dialysis catheter removed, surgery to dissolve clot was not successful, blood thinners started, and low grade fevers resumed. Just when we felt we couldn’t understand the magnitude of her problems, her kidney started functioning again little by little with each new day showing improvement. Antibiotics helped with the phantom fevers and she was finally able to go home on 12/26/13. She was too weak to walk and had to be re-trained to walk with legs strengthened with exercises; but she persevered. She is close to being able to start back to kindergarten and with help will finish this year on a positive note.
I have touched the high points (and low ones) of Addison’s story. There are many things that I may have missed; but Addison coming into our lives was no accident. God knew that she would bless our family and those that she came in contact with. My mother retired to help us with her when she came home from the hospital in 2008 and has mentioned many times that Addison changed her life. She no longer worries about the future; but is thankful for each and every day with whatever blessings or challenges they hold. Addison’s love of life – her life with all her problems – humbles you in a hurry. While there are many hurdles yet to overcome with the Liver Transplant pending, potty training still on-going, feeding tube still being used, therapies needed to help catch her up in school, multitude of medications that Addison requires; Addison carries on as though she knows everybody has a different normal and she is going to enjoy hers to the fullest.
Highlights of Bryan’s Story
Hello! My name is Bryan Hall Carr, and I spent a short time here on earth and now enjoy the presence of Jesus, face to face, interceding for my family and friends, and simply having fun!
I was born on March 2nd, 2008, with Purine Nucleotide Phosphorylase (PNP) Deficiency, an autosomal recessive genetic defect on my 14th chromosome. I was unable to make one little enzyme (PNP), and this made it difficult for my body to recycle purines and make enough DNA for cell growth.
I looked perfectly healthy as a baby.
Everyone loved my smiles. Yet, as time passed, I couldn’t sit up or crawl. By the time I was 10 months old, my Mom and Dad started taking me to lots of doctors.
As they searched for answers, I started therapy and finally sat on my own at 14 months and then crawled at 16 months! Everyone was thrilled. It took me much longer to develop enough strength to walk.
Finally, when I was 2 ½ , I took my first steps..just in time for my Daddy’s birthday!
However, while my mommy searched for answers to my muscle weakness, I kept getting sick, too. I always had ear infections, wheezing, breathing treatments, tummy problems, and got shingles when I was 3!
I still loved life, though. Even if I fell all the time, that didn’t stop me. I loved getting dirty, playing with my siblings CJ, Laurelin, and baby Joy. I loved cheering for my big brother’s baseball team and watching my Daddy coach. I loved watching my Mommy dress up and play knight and princess with me (I was her hero). Oh, talk about fishing? I could do that forever! I dreamed of becoming strong enough to go deer hunting with my Dad, but was happy to “shoot” a gun and ride the 4-wheeler. I dreamed of becoming a helicopter pilot. I spent lots of time in therapy and visiting doctors, yes, but I never let my hardships bring me down. Life is wonderful, folks. Don’t forget the gift you are given.
After 3 years of searching, lots of lab tests, and lots of doctor visits (even up to Johns Hopkins), I underwent many more procedures and lab tests in January 2012. One test caught my low level of T-cells and then caught the attention of everyone. On February 3rd, 2012, my PNP Deficiency was confirmed.
Since this disorder was identified in the 1970’s, only 75 people in the entire world have been diagnosed. Because my purines could not recycle well, due to lack of the PNP enzyme, my nervous, gut, and immune systems were hit the hardest. Because my immune system had almost no T-cells, I was headed for certain immune system failure. The only PNP children that survive past the age of 20 are those with successful bone marrow transplants. Because Duke had success with kids like me, had a thriving umbilical cord transplant program, and was the place my disorder was discovered, my family prayerfully decided to set up a second home in North Carolina.
I loved getting my head shaved! I did not like the big IV in my neck or all the medicines that made me feel so sick.
My transplant day or, what they call, “Bone Marrow Birthday” was June 6th, 2012…the anniversary of the WWII D-Day invasion. Since I loved everything army, we thought this was a perfect day. However, the actual transplant nearly killed me because the stem cell infusion set off such a powerful anaphylactic reaction , I almost stopped breathing. It was not in God’s timing, and I was given medicine to avoid “coding.” 3 hours later, I was out in the halls riding my trike!
My transplant worked and I suffered until it engrafted. My engraftment day was June 26th, 2012, and we all prepared for my discharge. Even though 2 viruses were trying to take over my body, the medicines kept them at bay. I always felt like I had the flu but that didn’t stop me from riding my trike, making special friends, spending time with family, and finding any way to have fun (like visiting the helicopters!).
Even Army Paratroopers came to visit me! They loved my Army outfit and played with all my toys.
Unfortunately, I started vomiting again. Then, the abdominal pain, bloating, and diarrhea. I developed GVHD (graft versus host disease). My new immune system was attacking my body. Treating 2 viruses and GVHD is rarely, if never, a positive outcome. When these challenges began in late July 2012, my body fought hard for 7 more months.
Eventually, I needed oxygen all the time. I vomited at least 10 times a day(sometimes up to 25) and lost liters of fluid from diarrhea. I fought raging fevers, which made my breathing more difficult. Because the viruses were too high in number, I was no longer able to leave my room. When my siblings returned home to Alabama for school, it broke my heart. I missed them so much. Their visits were a lifeline for me.
There were days I felt better, and Mommy loved to see my smile come back out again. I could feel everyone’s prayers because they kept me strong enough during my mission. Even though I lost the ability to walk, we still tried to sit. Even though it became too hard to talk, we still practiced my alphabet and prayers. Quitting is not a word in our family.
Even one week before I left Earth, I played walkie-talkie Bingo with my Mom (2-12-13). She always tried to find something fun while it also made me practice sitting up and trying to speak. The last time I had the strength to give my Mom and Dad a kiss on the cheek was shortly before Valentine’s Day. Before I fell asleep, I fought hard to speak out loud a prayer of thanks and then ask for a piece of steak! I couldn’t eat but I just wanted to taste one bite in my mouth.
The last few minutes I breathed Earth’s air, I was held by my Mom and Dad and surrounded by many people that loved me with all their heart. The song, “How Great is Our God,” played in the background. My mission was fulfilled! I came here to teach perseverance, joy, and love all while giving God the glory for my life.
All during my time here, I was called “One Tough Kid.” There are lots of kids just like me, blessed with an incredible struggle; yet, we LOVE LIFE and never quit fighting. We are meant to show the world that “Life is Worth the Fight.” It’s easy to be a Tough Kid, because God fills us with too much love to be anything else.
The Tough Kid Attitude…Do you have it?
H-Happy (despite circumstances)
Thank you for visiting our newly developing website, which will soon become central station for celebrating Tough Kids everywhere! We need your help to grow our small organization. Jay and I are soon approaching the one year anniversary of Bryan’s entrance to Heaven, and our hearts are quite heavy. However, Bryan’s birthday, March 2nd, also approaches, and we look to this day with hope. Since Bryan was always known as “One Tough Kid,” we declared March 2nd, “Tough Kids Day.” Encouraging everyone to wear blue, this day is in honor of not only Bryan, but all Tough Kids. Additionally, we plan to hold fun, athletic events every year to celebrate Tough Kids, inspire families, and raise money for various organizations. This year, our inaugural Tough Kids Tournament is March 8th at the YMCA, Alabaster Campus. To help us promote the tournament, please click here.
We also need many volunteers for the big day! For more information, please view the Tournament and Volunteer pages. In-kind donations are greatly appreciated!
Most importantly, we want to see our Wall of Fame grow and grow. Help us find other Tough Kids to celebrate, children that endure great challenges with the kind of spirit that encourages everyone they meet. Whether the child or teen suffers from cancer, physical limitations, or other diseases, this does not limit their spirit. There are many organizations that search for cures. We want to support them but also cheer on the young heroes that make our lives more meaningful.