When you first meet thirteen year old Amelia, she appears to be a normal, enthusiastic and fun loving teenager. But when you take a moment to get to know her you’ll find that Amelia’s story is far from normal.
Amelia’s medical journey began when she was only two years old after what appeared to be the flu. After several days of misdiagnosis, Amelia’s mom took her to another doctor who knew her case was much more severe. Within fifteen minutes Amelia and her mom were in an ambulance being transported and admitted into the hospital for pneumonia. What was meant to be a simple hospital visit – an IV and prescription of antibiotics to beat the infection – did not go as planned.
Over the next few weeks Amelia’s condition worsened. She was transferred to the PICU due to respiratory distress, as her doctors tried to make sense of why her lab results were off. Amelia’s kidneys were failing and she began deteriorating quickly. She was put into a medically induced coma, started on dialysis, and was given respiratory treatment around the clock. We were worried that we might have to consider an advanced medical directive if the worse case situation happened where Amelia couldn’t talk for herself and sunk into a vegetated state.
Amelia developed a complication called Hemolytic Uremic Syndrome (HUS) from the strain of Streptococcus 19A, caused by an abnormal destruction of red blood cells, which clog the filtering system in the kidneys. Over the course of the next three weeks, young Amelia battled for her life.
“Her lungs collapsed, transfusions were needed, and a few more surgeries to try to get dialysis to work for her,” shared Amelia’s mother, Wanda. “Doctor’s warned us that if she survived, she could be blind, have brain damage or kidney failure.”
But Amelia was a fighter and eventually came out of the coma, with her vision and her cognitive function intact. Unfortunately, her kidneys were severely damaged. With her kidneys impaired, her doctors worked around the clock, providing the best possible treatment in hopes that Amelia’s kidneys would repair themselves. After four months of treatment Amelia’s acute renal failure became chronic. With no signs of little Amelia’s kidneys recovering, her doctors encouraged her parents to list her for a transplant.
On July 3rd, 2008 Amelia received a cadaveric kidney transplant from another three-year-old child. “It was the biggest gift God could have sent our way. It started working immediately. By post-op day 4, Amelia was spinning around the nurses’ station with her IV pole lagging behind,” Wanda remembers.
While the transplant was a blessing for Amelia and her family it did not come without its own set of challenges. There were new medications to prevent rejection, a weaker immune system, lots of ear and sinus infections, ear tube surgeries, and plenty of hospital visits along the way.
But throughout each and every challenge that Amelia has faced, she has persevered and never lost sight of what’s important in life. By coming to enCourage Kids events, Amelia and her family are able to step out of their everyday routines and enjoy their time together.
“enCourage Kids has helped strengthen our family by giving us positive experiences to enjoy together. It has also introduced us to other families that understand our struggles and are also navigating difficult medical journeys with their children. We can help each other best when we don’t feel alone,” Wanda explained.
Today Amelia is succeeding in every facet of life. She’s creative and loves to read, write, paint, and play the piano. Just this year, Amelia entered her artwork into the American Kidney Fund Kids Calendar contest. She was selected as a finalist and her art work will be featured in the 2019 calendar. Amelia is an excellent student and was recently inducted into the Junior Honor Society at her school. She’s even learning sign language to be able to communicate with a friend.
Amelia recently went to her first concert through enCourage Kids and Garden of Dreams Foundation, and while she seems like a normal teen, she’s been through more than most people will in their entire lives. We’re proud to be a part of Amelia’s medical journey, to have her as a part of our enCourage Kids family, and to celebrate her on her 10 year kidney transplant anniversary.