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Adelaide or Addie Grace Jackson was born July 21, 2004. She was under stress at the end of delivery, needed a little help breathing, and went to NICU. While in NICU, the Doctors had many concerns. One was that an MRI showed Addie had two brain bleeds in her right parietal and right temporal area of the brain. Her stay was 10 days and involved many tests, but all tests came back normal. After going home, Addie had delays but was reaching milestones. Her largest delay was speech. We had early intervention involved, and Addie was having extensive speech therapy.
At approximately over three years old, she began speaking. At this time in her life, she was seeing an ENT and audiologist for possible hearing loss, had many ear infections, and had many sets of tubes. At age 6, Addie was referred by her pediatrician for pain and an abnormal lactic acid blood level. She saw a Pediatric Rheumatologist. That doctor sent us to a Neuro Geneticist with a suspicion of Mitochondrial Disease. Addie had surgery for a spinal tap, muscle and skin biopsy. These studies did show that Addie has Mitochondrial Disease. Addie had symptoms of fatigue, muscle pain, stomach pain and headaches. The doctor started her on a compounded COQ10. Addie has seen and is followed by many physicians. Addie has a hearing loss, vision trouble, cognitive delays and many daily symptoms that go along with Mito. Addie has had ear trouble since early in her life. Most recently she has had six surgeries for Cholesteatoma in her right ear. She wears hearing aids. School has always been very difficult for Addie. She cannot function in a regular classroom, and does not perform on level. Cognitively she could not keep up in public schools, and IEP’s did not accommodate her very specific needs. She is in a private school currently that can work with children on her level and accommodate differences in learning. Her social, emotional, physical and cognitive delays are a big concern. Addie has always had trouble attending a full day of school because of her fatigue, let alone field trips or other special events. Currently, she is only able to attend school from 9 am until noon, Monday through Thursday. Recently, Addie is seeking counseling to help with anxiety. She is also seeing a Psychiatrist because of some behavioral issues. Addie has been followed for several years by a Neuro-Psychologist. Addie’s medical needs are complex, and hopefully the Mayo clinic would give us a comprehensive look at all aspects of her health.
Caleb was born on July 9, 2011, at 8:44 AM, not quite 32 weeks into the pregnancy. After losing his heartbeat on the monitors and his mother being 9 centimeters dilated already, an emergency C-section was performed. He took his first breath after being alive for 2 entire minutes. He was 3lbs 9oz and 16in long. In May/June of 2011, the Messer family attended a fundraiser at TIC, in order to raise money for the CMN, specifically for the purchase of one giraffe bed to be donated to the NICU at Columbus Regional Health.
Less than 2 months later, little Caleb was laying in the same giraffe bed, hooked up to oxygen, heart and blood pressure monitors, alarms going off all around – a giraffe bed that was JUST purchased and placed into the NICU thanks to the fundraiser that we were a part of through TIC. He had a C-pap, was jaundice, had a feeding tube and could not maintain his own body temperature. He required around the clock monitoring of his vitals and was unable to eat without a feeding tube. As the days passed, Caleb became stronger, but could not eat from a bottle just yet nor maintain his own body temperature, so he remained hooked up to a feeding tube in the giraffe bed. Finally, his mother was able to kangaroo with Caleb and his parents started trying to feed him from a bottle. He could barely drink a fourth of what most babies drink. For several weeks, he could only be held twice per day, one hour each time as it caused him too many burn calories. He had to have around the clock monitoring of his vitals. Finally, 1 month after his birth, Caleb ate every meal through the bottle instead of a feeding tube, which allowed him to be able to go home after 34 days in the NICU. His immune system was very low, but his parents were able to protect him from sickness and he did not endure even an ear infection until he was almost 7 months old. Since then, Caleb has flourished in his development and growth. He was slightly behind in his walking – almost 16 months old before he walked on his own. But now he is in 1st grade and is caught up completely in his development, if not beyond his peers. He is a happy, healthy, well adjusted, spirited 6-year-old. Caleb loves his family, sports, superheroes and is all boy!
Lillie Ana Rivera was born on May 8th, 2015 to her parents, Robert and Lindsay Rivera. Lillie was growing well in utero, but her mother was having high blood pressure and was quickly diagnosed with preeclampsia at 27 weeks pregnant. It was becoming dangerous for the health of Lillie and her mother if she was not delivered. Therefore, Lillie was born at 27 weeks 3 days and weighed 2 lbs. 2 oz. She was born at the Midtown Medical Center where she was immediately taken to the NICU.
Lillie’s lungs weren’t fully developed yet, so she was immediately put on oxygen, given an IV for nutrition, and placed under the Bili light for phototherapy. Because of Lillie’s low birth weight, she was also placed in a heated bed to keep her body temperature up. With the care and love of nurses and doctors, Lillie thrived in the NICU. There were days that were harder than others, and not every day seemed as though progress was being made. Lillie had to receive a blood transfusion, which is very normal for a baby in the NICU, but that meant Lillie could not be held for kangaroo time for a few days and had to fast. Some days, Lillie’s breathing rate was too high and having kangaroo time would cause her to have too much stimulation. Overall, Lillie continued to grow and improve every day and was able to gain enough weight to get out of the heated bed and be placed in an open crib. She also began learning how to take a bottle. Lillie continued to gain weight and grow. She still needed oxygen support and had a little trouble being weaned off of it. Lillie’s family would visit her daily and Lillie’s mother would spend time kangarooing and feeding Lillie in the NICU. The nurses and doctors became friends and family during this trying time.
On July 16th, after 69 days in the NICU, Lillie was able to come home with her parents. She did have to come home using a small amount of oxygen but was able to wean off of the oxygen within a month. Lillie would not have been able to grow and thrive like she did without the NICU. Lillie’s story in the NICU is a miracle story and she is a happy, healthy, almost year old baby!
Natalie is a 7 year old with Smith-Magenis Syndrome (SMS). She was born premature at 34 weeks at Columbus Regional. She was in the NICU for four days until she was transferred for intestinal surgery and remained in the hospital for 7 weeks. A NICU nurse in the delivery room noticed a few very subtle abnormalities about Natalie on the day she was born. This initiated the testing that uncovered a missing piece of genetic material from one of her chromosomes. The disorder occurs in approximately 1 in 25,000 live births and is underdiagnosed. Smith-Magenis Syndrome causes global developmental delay, complex medical issues, sleep disturbances, and challenging behaviors including self-injury. Because of the expertise of the medical staff at Columbus Regional, we were able get a diagnosis and start early intervention therapies with Natalie from birth. Natalie is doing extremely well and is an absolute ray of sunshine to anyone she meets. We are beyond blessed to have this beautiful and precious angel in our lives.
When Grant was born, he was screaming, crying, and generally just mad to be there. The crying was, in our opinion, an amazing sign. We had heard so many stories about babies being born early and not crying due to their lungs not being fully developed, that we naturally assumed that this was a great sign. At this point, this delivery was exactly like our other two children, who both were very healthy babies and both born full term. The doctors let us take a quick look, I was able to hold him for a very brief moment, and then they quickly whisked him away to the NICU to examine him. Within a few hours, he was on a CPAP, and within 12 hours he was moved to a ventilator.
The doctors assured us that this was okay and that his lungs just needed some time to develop. At this point in time, we were still unable to see him. 24 hours later, the doctor came in our room and sat down. Hilary and my heart stopped, it’s never good news when the doctor sits down when giving you news. He informed us that Grant’s lung collapsed, and they had to perform emergency surgery on him. They were able to repair it, and he was going to be OK from that, but it was quite dicey at the time and also meant he was going to be in the NICU for a lot longer than we had originally anticipated. He ended up being on the ventilator for 21 days. If that wasn’t enough for the poor baby, he also contracted two separate infections, leading to 21 days of antibiotics that were eventually given to him through his belly button.
After 43 days in the NICU, Grant was finally able to come home. Everyone at the NICU, from the nurses, to the doctors, all the way to the janitors, was amazing. Everything they did for our family can’t be explained in words. From putting up with our frustrations, to dealing with questions from siblings and grandparents, to convincing us to bring Grant’s older brother and sister to see him even when he was covered from head to toe in wires was a blessing to us.
Since coming home, the continued treatment that Grant has received from the multitude of specialist from Children’s Hospital of Alabama has also been amazing. Grant has needed some help developing certain things that would come normal to a full-term baby. He has needed help with occupational, speech and physical therapy due to him being a preemie and being on the ventilator for so long. With all their help Grant is getting stronger and developing faster each day.
Each of the Wheelis Sisters has type 1 diabetes. Every day is a fight for them, and we stand with them!
“We were born at 24 weeks and 3 days. We spent 4 months in the NICU at the medical center because we were very sick and faced numerous life threatening complications. Had it not been for the Children’s Miracle Network we would not have beaten significant odds and be here today.”
My name is Emma Adele Slade. I’m the youngest of three girls and an identical to another sister. I’m a triplet! Born 15 weeks early weighing only 1 pound 2 ounces, I’m the smallest of the three. The doctors were not sure if I would be big enough to intubate so my mommy and daddy had to discuss and make some serious decisions with the doctor before I was born. I was bigger than expected so I spent 95 days in the NICU at the Medical Center. During my stay, I had many procedures and ended up going home on oxygen, but as the months passed I no longer needed it.
Without the Children’s Miracle Network, I would not be here. This facility was here in my community to provide the care and treatment needed for my sisters and me. The equipment, supplies, and staff in the NICU were an important part of my care. Without CMN, this would not be possible. Thank you CMN and AUDM for all you do for the babies!
Love, Emma Slade
My name is Gracie Leigh Slade. I’m one of three girls. I was born 15 weeks early at 1 pound 6 ounces. I’m a triplet- the middle sister! I spent 95 days in the NICU at the Medical Center. When I was seven days old, I became very ill with an infection that resulted in my body starting to shut down. I was given a very small chance to live due to the degree and type of infection. My momma and daddy along with both sets of grandparents sat by my bedside all night. I finally pulled through but was intubated much longer than my sisters and required closer care and monitoring. I went home on oxygen but after 6 months no longer needed it.
CMNH has provided the urgent care, equipment, and supplies and staff that I needed. Without CMN, I would not be here today. CMN has given my sisters and me a chance of life, something that my momma and daddy are so grateful and thankful for. Thank you CMN and AUDM for this wonderful facility at the Medical Center! Without your generous donations, this would not be possible.
Love, Gracie Slade
My name is Isabelle Reese Slade. I’m a triplet born 15 weeks premature. I’m the oldest of three girls and was the biggest at 1 pound 14 ounces. I spent 102 days in the Neonatal Intensive Care Unit at the Medical Center. During my hospital stay, I had several surgeries and multiple procedures. I have mild cerebral palsy due to a brain hemorrhage when I was only a few days old. I continue with physical therapy occupational therapy twice a month, which has helped me to do lots of things that I may not have been able to do.
The Children’s Miracle Network has done so much for me, my sisters, and my family. Without CMN I’m not sure if I would be here. The NICU staff, the equipment, and supplies are an important part of care for all of the premature babies born. Without CMN, I’m not sure this facility would exist in this community. Thank you CMN and AUDM for all you do For The Kids!
Love, Isabelle Slade
“In October of 2010 I ran into the back door at home. I hit my right side of my face hard, so hard it left an imprint of where I hit on the door for at least 2-3 weeks. Days after I hit this door I started having pains in my jaw on the right side. The pain lasted for days and then turned into months. They said I had TMJ. They treated for that and still nothing. Then around January 2011 I felt a bump behind me right ear. We went to get that checked out at my local Dr.’s Office. The Physicians Assistant there felt what I felt. She ordered a Cat Scan that would then save my life perhaps. The results came back there was a tumor there. In February 2011 I was diagnosed with Stage IV Rhabdomyosarcoma. (I’ll keep it short here) Over the next 3 years I was treated with a number or chemotherapies (8 I think), I did as much radiation as I was allowed, I had a couple of 90 day stays in the hospital, and had many surgeries done. And after relapsing a couple times I hate to say that as of July 2014 the cancer is active. It’s funny tho, cancer doesn’t realize every time it comes back I come back stronger ;D”
Martin led a brave fight against cancer for 5 years, and on April 30th, 2015 he finally won. We hope you will join us in celebrating his life through honoring his courage and strength.
Aidyn is strong and loves life. Although he has PTSD due to all the lengthy hospital stays, over 80 surgeries, chemo and Proton Radiation, he loves life. He has battled cancer 4 times & won but at a cost. Unfortunately, they had to remove the last 4 vertebrae’s in his back which left him like a spinal bifada patient. He gets around by scooting and has lost all muscle on his bottom. Aidyn also fights constant infections and is now deaf. Aidyn loves the outdoors but is very limited at what he can do.
“Aidyn was diagnosed at 14 months old with a germ cell cancer, Sacrelcoccygeal Teratoma. After the initial surgery of taking the tailbone out and chemo, Aidyn’s cancer returned four times going from his back to his right hip. In November 2010, they took out the last 4 vertebras of his back and he was paralyzed for 3 months. It has been a long road. He has had over 30 chemo treatments, over 80 surgeries; he’s had around 30 central lines, 3 ports, 2 PIC lines. He spent more time in the hospital than at home during the first 4 years. Today he is fighting an infection in his chest cavity that has been there for 3 and a half years. Because of this infection and its treatment, he is now completely deaf. He also has PTSD and is high functional autistic. We don’t currently have a prognosis but we live everyday to the fullest and glad that you are part of it. He has also learned how to walk 11 times now. He is my hero!” – Dora Reid, Aidyn’s Mom
“Parker was born with hydrocephalus. Parker’s parents received the diagnosis at 20 weeks in the pregnancy that there was a blockage between the third and fourth ventricles of Parker’s brain that was preventing the spinal fluid from draining. As a result, the fluid would build up and compress Parker’s brain matter against his skull, threatening to severely hinder Parker’s neurological development. Parker was born with 8 millimeters of brain matter, which is essentially no brain. At two days old, a shunt was placed in Parker’s brain, allowing the fluid to drain and releasing the pressure from his brain. Over the next 9 months, Parker underwent a series of shunt and craniofacial surgeries to ensure the proper draining of excess fluid and to reshape his skull, in order to make room for his brain to hopefully grow to appropriate size and develop properly. Parker began therapy at 4 weeks old and God blessed Parker and his family with a miraculous recovery. He currently has some fine and motor difficulties but continues to amaze everyone. He loves to sing, dance, and be on stage. We are thankful to God for the miracle that is Parker.”
– Crysie Grelecki, Parker’s Mom
Parker has two younger siblings, Chase and Emily. He LOVES everything Auburn, especially Aubie! His favorite movie is Lady and the Tramp. He plays guitar and can speak Spanish. If Parker could spend the day with anyone, he would spend it with Bruno Mars. One word that adequately describes him is “rockstar” and his superhero name would be “Super Par Par the Rockstar,” a name he coined himself.
Ella Goudie was diagnosed with Acute Lymphoblastic Leukemia on October 10, 2011 at The Medical Center. Prior to Ella’s diagnosis, she was a very funny, beautiful, and strong-willed five-year old. After one year of cancer treatments that included over 25 days in the hospital, 15-plus spinal injections of chemotherapy, IV-injected chemotherapy, steroids, and daily oral chemotherapy, she was still the same very funny, beautiful, and strong willed girl! Through the hair loss, weight fluctuation, and over six months of solitary confinement, Ella kept her smile and toughness. She is definitely no pushover! Ella and her family put their trust in a one-word reply to the question hey asked Dr. Paul LoDuca, a board certified pediatric hematologist-oncologist who specializes in the diagnosis and treatment of children with blood disorders and cancers. The Goudies asked, “Are we in the right place to battle this horrible disease?” Dr. LoDuca said “Yes,” and he is right. Ella’s team includes Dr. LoDuca, her nurses Christy Womack and Hannah Potter, and Meg Johnson, a Certified Child Life Specialist who uses various ways to ease Ella’s worries when she is in the hospital. Meg’s valued position is supported by Children’s Miracle Network. The Goudie’s say Ella’s entire team is sent from above and insist they could not have made it through these past years without them. Thankfully, Ella was able to return to school and was able to take her medicines at home and as an outpatient. Ella received chemotherapy through her port monthly and spinal taps every three months over 18 months at Midtown Medical. Ella’s last treatment was December 10th, 2013. She has finished all her treatments and has beat cancer! We are so happy, thankful, and extremely proud of her!
Princess Ella is in second grade and loves to dance and swim. Her favorite color is pink and the best gift she’s ever been given is her little brother, Luke! She loves mint chocolate chip ice cream and her favorite singer is Darius Rucker.
Sydnie Pike is a complicated kid. She’s 12 but gets mistaken for a toddler (which she finds very annoying). She loves to cook, but can’t eat so many of the things she likes. She’s a take-charge kind of girl, but is faced with challenges no amount of moxie can overcome.
Sydnie has Schwachman-Diamond Syndrome, a rare disease that’s often hard to diagnose because it involves so many organ systems. S-D children typically have low white blood cell counts and difficulty absorbing nutrients, including vitamins from food. They have lung problems similar to children with cystic fibrosis, as well as problems with bone growth, and they’re susceptible to life-threatening infections.
“And Sydnie, not to be outdone, actually has a few other things thrown in that make her a little more complex,” said Dr. Paul LoDuca, a pediatric hematologist-oncologist at The Medical Center who specializes in diagnosing and treating children in our region with blood disorders and cancers. Sydnie has something else that makes her stand out from the crowd. “She is a classic trouper kid,” Dr. LoDuca said. “She’s overwhelmingly tough and doesn’t moan or complain about the cards she’s been dealt.”
Born at 26 weeks and weighed 2lbs..I spent 79 days in the nicu and never had to have any surgeries or complications from being a preemie..thanks to CMN for the giraffe beds I stayed in during my stay that kept me from getting sick.
Karsyn loves Disney! Her favorite movie is Frozen, and her favorite tv show is Sofia the First. Sofia is her favorite Disney character. If she could make any wish, she would go back to Disney World and meet the Disney princesses. One word to describe Karsyn is energetic.
I was a 14-year-old girl living a normal life when I started to show signs of an illness. I started to pass out at school. I had reoccurring chest and stomach pain, and numbness in my arms and legs. These things are what caused the biggest change in my life. I was seen by specialist after specialist from Dothan, Alabama to Atlanta, Georgia and was diagnosed with numerous things such as dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome), EOS (Eosinophilic Esophagitis), reflux, prolonged QT wave, gastroparesis, iron deficiency anemia, mitochondrial disease and the newest of these, Porphyria (AIP). The gigantic “Monster” of this all was unidentified for a while. Porphyria A.K.A. the “Monster” has been controlling my life for the last three years. I have had too many hospital visits to count, had several procedures, surgeries, treatments, blood transfusions, and because of this I ended up doing homeschool. It’s like I’m fighting my own body every day and I don’t know what to ever expect, but what I do know is that I am getting stronger each day and Porphyria has nothing on me.
When Emily grows up, she wants to be a pediatrics nurse or a child life specialist. Her favorite thing to do is take pictures, but if she could learn anything new, she would learn how to play the guitar. If she were a superhero, her name would be Miss Warrior, and her superpower would be to cure disease so no child would ever have to be sick. If Emily could spend the day with anyone, it would be Sammie Coates. War Eagle to that!
George was born at 25 weeks and stayed in the NICU for 4 months. Now he is a healthy, happy, rambunctious four year old boy!
George is in the three year old class at his preschool. His favorite sport is soccer, and his favorite movie is Planes. George loves to play with his dog, Hogan.
“Chloe was born on May 12th, 2010, 3 and a half months early. She came at 26 weeks, was underweight, and was only 11 inches long. We spent 80 days in the NICU at Columbus Regional. Chloe was very sick and had to receive six blood transfusions over her 80 day NICU stay. She had to also learn to suck a bottle and passi. We are so thankful for CMN and all they do for our NICU!” -Pam Wall, Chloe’s Mom
My brother and I were born five weeks early. Because we were born premature, our lungs weren’t developed all the way and we had to learn to eat. My brother’s lung collapsed and he had to go to the High Risk Side of the Neonatal Intensive Care Unit while I stayed on the Special Care Side. We were away from each other for ten days. Finally, my brother got to join me in an open crib in the Special Care Unit. We spent 13 days in the NICU.
My twin brother and I were born five weeks premature. My lung collapsed. I was taken to the High Risk side of the Neonatal Intensive Care Unit while my brother stayed on the Special Care Side. I stayed in High Risk for ten days until I got to go back to Special Care and join my brother in an open crib. My brother and I stayed in the NICU for 13 days.
Jake and Charlie are two cool kids. Everyone wanted their autograph on the red carpet at AUDM 2015! Charlie loves The Incredible Hulk, but Jake is more of an Avengers kind of guy. This dynamic duo is going to be unstoppable when they grow up to save the world as a firefighter (Jake) and police officer (Charlie) when they grow up.
I was admitted to the hospital in November 2014 after having a procedure that found I had ulcerative colitis that affected 110% of my colon, and I couldn’t eat from Saturday until the following Saturday! A WHOLE WEEK! I like to call my disease “awesomeness colitis”.
“Hannah has had stomach issues since she was a toddler and has seen several specialists in Atlanta over the years but the results always came back inconclusive. After a really bad episode that started in October 2014 like a virus, Hannah had a colonoscopy and was diagnosed with Ulcerative Colitis in November 2014. Her entire colon (100%) was inflamed. She was in the hospital for almost a week and has had to go back a few times for milder flare-ups. She has to take a lot of maintenance drugs that often make her sick, and has to have routine blood work. It can be an extremely hard disease to manage, especially for a child and the fact that there is no known cause or cure at this time.” –Angela, Hannah’s Mom
If Hannah were a superhero, she would be called Hurricane and be able to fly. She loves roller coasters, especially Mount Everest and Tower of Terror. Riddles, jokes, and puns make Hannah laugh. Her favorite singer/songwriter, Taylor Swift, is also her role model. Hannah would choose to spend the day with Taylor if she could spend the day with anyone!
“Aimree was born with trisomy 7 and an upper limb difference. She had her first surgery at 11 weeks. She has spent her fair share of time in the hospital. At two she stopped moving, and lost all the skills she gained in the last year of physical therapy. She could not sit up, stand, or walk. After three months we finally got a diagnosis, she had systematic juvenile idiopathic arthritis. It is very hard to watch your child struggle. But it is just amazing to watch a little girl. Who is in pain can find the joy in everyday. Over the course of the next year, we worked on finding the right combination of drugs to get her moving. They did steroid injections in all of her joints multiple times. The rheumatologist was limited by Aimree’s young age and what drugs were available to her. At the age of three, she started getting infusions every month along with a combination of oral drugs. Last summer Aimree’s infusions went to every other week and Aimree was finally able to have more good days than bad. Last year, Aimree took her first steps and said her first words. Aimree works really hard at getting stronger. Some days are harder than others, but she is a fighter. She finds the joy everyday and just seeing her do that is amazing!” – Shana Vasquez, Aimree’s Mom