Meet a Patient
Meet Mighty Mabel
Our family has always been big fans and loved Children’s Healthcare of Atlanta through our involvement through various Gwinnett community events. Never did we think we’d become frequent visitors of CHOA until our daughter Mabel was born. We received a birth diagnosis that our daughter had been blessed with an extra chromosome (Down Syndrome) and a congenital heart defect (AVSD) that would require open heart surgery in the first few months of life. One of my first calls after finding out such shocking news was to my closest friend at CHOA. She assured me that Children’s would be there every step of the way to care for our daughter.
It was no small coincidence that “Mighty” Mabel’s heart surgery took place on Cape Day October 19, 2018. We made it through that day knowing that we had an expert team caring for our baby and with the support of friends cheering us on by wearing special Mighty Mabel CHOA capes across the metro Atlanta region.
And if you think Kevin Bacon has six degrees of separation, try walking the halls of Children’s. It’s like everyone is a friend or knows someone you are connected to. It was amazing to feel the special support and connection to other heart families and to the Children’s staff that would go out of their way to find us in the hospital to check in to see how we were doing.
Through all the appointments with various Children’s specialists and hospital stays over the course of Mabel’s first year of life, we met with team members who knew how to talk to parents, how to calm fears and care for our daughter like she was the only one they were seeing that day. Besides treated their patient Mabel, they treated a whole family, and made sure that our son Mattox, Mabel’s older brother was given proper attention too. He loved riding in the red hospital wagons, getting snacks from the cardiac floor snack cart and drinking blue slushies in the Egleston cafeteria. He even got to drop the hockey puck on the ice and yell “Let’s Play Hockey” while he represented his sister for CHOA night at the Gwinnett Gladiators Game!
We’ve been blessed with a community that loves Mabel in ways beyond a parent could ever dream and to support opportunities that show CHOA some love on her behalf. We are thankful for a community who shows up to buy cookies at Chick-Fil-A Sweet September, collect snacks for Feed the Heart Snack Cart and trilled to join in on the 2021 Mailbox Brigade for the first time this year, and expand its impact to our area. We love to tell everyone about our CHOA experiences and find ways to give back to an organization that gave life to our little girl. Because without Children’s, her heart and ours would be broken!
On September 21, 2019 we were given news that no parent ever wants to here. Her diagnosis came out of nowhere. Autumn had been complaining that she was hurting but could not describe the specifics. One morning, the pain was so significant, she could barely stand up and informed us that her legs were causing her a great deal of pain. After a trip to the pediatrician, they noticed something on her body called Petechiae, which is a very small dot where a blood vessel has popped under the skin. The next thing we knew, we were in the Children’s emergency room being told that Autumn, our middle child at only three and half years old, had some form of leukemia.
From the moment we arrived we felt very cared for by the doctors and nurses at Children’s. Within a matter of minutes, we were talking to Dr. Eddington at the Aflac Cancer and Blood Disorder Center. She had already started the process of getting Autumn admitted to the hospital as well as encouraging us by explaining how strong kids with cancer are. She stayed with us making sure we were as comfortable as possible before finally going home for the night.
Autumn’s condition continued to deteriorate throughout the night while the nurses worked to finding the right combination of medicine to give her to help control the pain. Throughout the first week, the nurses at Children’s went above and beyond to make Autumn and our family as comfortable as possible.
Later on, we were assigned Dr. Lew and Dr. Eddington as Autumn’s two primary doctors. Together they have helped us every step of the way. They take the time to answer all our endless questions at every visit.
This fall, just over two years after her diagnosis, Autumn will finish treatment! As Autumn comes toward the end of this journey, we have hope for a bright future for her because of the amazing Doctors and Nurses within the Aflac Cancer and Blood Disorder Center at Children’s Healthcare of Atlanta.
During a routine scan of my son’s heart at an ultrasound appointment, the doctor explained that he had a congenital heart defect. News no expectant mother wants to hear. As I digested the news, I was handed a card with the Children’s Healthcare of Atlanta emblem on it and was told to report the next day for an additional scan and course of action.
The next day, Children’s welcomed my husband and I with open arms as they very carefully explained what was going to take place in the future. They sat with us, talked over every detail, and answered every question we had about our son’s fate and what his future would look like. We became a member of the Children’s family that day.
When Sam was born, he was transported to Children’s where our surgeon brilliantly performed a successful surgery and we began the process of finally going home with our baby. However, while in recovery, Sam suffered a stroke. Again, Children’s took us by the hand and showed us the path that we would walk down with Sam as our son. They have continued holding our hands, and our hearts, these past 5 years. Through specialist appointments, therapies, tears, but most importantly hope & will – we have a healthy, wild, athletic 5-year-old who knows how to crush a doctor’s appointment.
Through the depths of my sadness and fear, I became a Friends member, because I knew that I had to give back to the place that saved my son’s life. There are so many families that benefit from the work that the Friends groups do, mine included. Thank you to every member who ties a bow, gathers greenery, and acts with selflessness this season, it truly does make a difference.
Our family relocated to Atlanta in the Fall of 2015 and we were immediately inspired by the community’s philanthropic support of Children’s Healthcare of Atlanta as we spotted Boo signs and Mailbox Brigade tags throughout town. We were thrilled to be involved in such generosity the following year when a friend invited us to help decorate mailboxes in the Arden/Argonne neighborhood. While our two daughters played in various front yards, my husband and I met new friends, too, all while attaching greenery and red bows to mailboxes.
The significance of Mailbox Brigade became even more poignant in 2017 when our youngest daughter, Kinsley, spent over three months at Egleston waiting for and recovering from a heart transplant. During Kinsley’s hospitalization, we directly experienced the compassion and heroism that defines Children’s Healthcare of Atlanta. Not only did they treat and work tirelessly to give Kinsley a second chance at living a
fulfilling life, they involved her big sister, Campbell, in numerous portions of Kinsley’s care and therapies to help her cope and understand her sister’s circumstances.Thanks to the skill and unyielding dedication to every element of our daughters’ success, Kinsley and Campbell are both thriving, rambunctious and happy today.
Eager to show our gratitude, friends and family helped us expand the mailbox brigade into to the Westminster/Milmar neighborhoods in 2018. We were thrilled to decorate over 60 mailboxes in our first year and cannot wait to see how many more we can accomplish in 2019. Our family’s favorite holiday tradition remains counting mailbox brigade tags as we drive through Atlanta because we know that each one has a direct impact on the ongoing health and wellness that our daughters enjoy. Thank you for purchasing a mailbox and extra gratitude to those of you who donate your precious free time to help decorate them!
Born on May 13, 2014, Fenton is the baby of his family. From the start, his personality was an easy read: he would not settle for being the little one! He does things his own way, in his own time, and with maximum curiosity. He loves life and learning. Fenton graduated into Pre-Kindergarten at The Glenn School in May of 2018 and summer was off to a good start. He was loving the long days and pool time while his family worked packing their house to move to a new neighborhood. Fenton celebrated his 4th birthday at a playground party. Then, on a Saturday morning one month later, he woke up complaining of headaches and neck pain. He headed to the ER after he lost feeling in his right hand. Quickly, he was admitted to ICU at Children’s Egleston Hospital where an MRI diagnosed him with a rare disorder called Transverse Myelitis. Later, the CDC confirmed his condition to be the more debilitating Acute Flaccid Myelitis (AFM), one of four cases in Georgia and nearly 200 nationwide in 2018. Fenton’s spine was impaired with inflammation that quickly destroyed tissue including nerve conduits to his extremities. His entire body became paralyzed one week into the hospital stay. Specialists tried to unearth the reason by testing for viruses, infectious diseases, and autoimmune disorders. All the lab work was negative.
Now a year later, Fenton remains paralyzed above the waist and ventilator dependent requiring constant care. The AFM condition is alarming the medical research community in its likeness to polio. It is believed to be a summer respiratory virus that certain children (typically young males) lack a gene to defend. As such, physicians predict Fenton’s outlook by comparing him to patients impaired by polio generations ago. There is a degree of permanence, but fortunately technology has improved and means of sophisticated care are much more accessible today than years ago.
Today, Fenton’s life is built upon a weekly therapy schedule. With electrical stimulation and consistent movement, children like Fenton show strengthening and subtle, yet meaningful muscle improvements over time. His family has watched the progression of his legs coming back online, now up to his hips.
Fenton chases opportunities to work with specialists in Philadelphia and Baltimore and his caregiving team stays prepared to follow any new lead along his course. While the future will be different for Fenton, his family feels so fortunate to have him here impacting new lives in very meaningful ways. Fenton received the first Boo sign of the season at his therapy session a few weeks ago. Support kids like Fenton and buy a Boo!
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