By Abbie Engelhardt, R.N. for Lee’s Summit Physicians Group
March 21, 2020 is Absolutely Incredible Kid day. We would like to recognize just a few of our incredible kids. These kids were chosen because their stories show resilience, determination, courage and compassion. Through their journeys and struggles, they have prospered. We are blessed to work with such amazing kids!
Asher was 3 years old when he was diagnosed with Autism Spectrum Disorder. At the time he was diagnosed, he was a quiet, quirky kiddo who could only say maybe 20 words. He struggled with any change to his routine; had difficulty socially interacting with anyone he didn’t know well; and had a diet so restrictive he would only eat 5-10 different foods. Now Asher is 6 years old and with the help of applied behavioral analysis, or ABA therapy, he has whole conversations, is learning to read, loves playing and interacting with other kids, and eats a variety of foods. There are still things he’s working on, but boy has he come a LONG, LONG way from that 3-year-old boy that was first diagnosed 3 years ago.
Camden was born with Esophageal Atresia with a Tracheo-Esophageal Atresia. This means his esophagus did not connect to his stomach at birth and the lower portion incorrectly connected to his airway. Camden spent most of his first three years of life at Children’s Mercy Hospital and Boston Children’s Hospital to have countless surgeries to fix his esophagus. Since then Camden has had several surgeries on his vocal chords and airway at Cincinnati Children’s Hospital. Camden is now a happy, and remarkably well-adjusted 10-year-old who loves video games, spending time with his friends, and playing with his dog!
At age 9 we found out that Ellen had asymptomatic high blood sugars by accident. It became clear that she had diabetes, but not a common form of diabetes. After some investigation and help from diabetes researchers/genetic testing, we were told that she had Wolfram syndrome. Wolfram syndrome (WS) typically causes insulin dependent diabetes by age 5-6, blindness due to optic nerve atrophy by age 18-20, and death between age 30 and 40. Ellen’s form is a unique genotype, previously undiagnosed in any other patient; it appears to be a relatively mild form of WS. Since Wolfram syndrome is a 1/500,000 disease it is considered ultra-rare… there is very little information about the disease itself, and up until recently no known treatment.
Over the past 5 years Ellen has opted to keep a low carb diet, use rapid acting inhaled insulin for meals, wear a continuous glucose monitor to follow her blood sugars, take 12-16 pills a day, and exercise routinely. This has resulted in minimal progression of her diabetes and no progression of damage to her optic nerve. She has worked with Washington University in St. Louis to allow them to create stem cells for study in their lab from her blood. She has recently started on an experimental drug for WS which has resulted in near resolution of her high blood sugars, and a very big light at the end of the tunnel. There are more medications and gene therapy waiting in the wings as the next step for treatment. Ellen continues to keep an incredibly positive outlook with respect to life and her disease. She has a remarkable acceptance of her complicated situation and continues to assume that we will simply move forward and continue to improve treatment for Wolfram syndrome.
Emily is a very active, almost eleven-year-old, who was born with Sturge Weber Syndrome and Klippel Trenaunay Syndrome. Emily has a birthmark, seizures and Glaucoma as a result of her Sturge Weber Syndrome but she hasn’t let this slow her down. While she has had numerous procedures to correct her eye pressure and she has to go see specialist doctors a lot more than she would like, she also is very active in the YMCA Challenger program, her church youth group and the Lone Oak 4H Club.
Emily was diagnosed with papillary thyroid carcinoma in March 2017 at the age of 13. She had a complete thyroidectomy with removal of her thyroid, twelve lymph nodes and a tumor a week later, and all were malignant. She later received radioactive ablation. One year later, she developed an abscess at her surgery site due to her body rejecting the sutures from her first surgery. A second surgery followed to clean out the infection and that resulted in six months of problems with her wound not healing and developing more abscesses and granulomas that kept draining. She had a third surgery 18 months after her first one to clean it out one more time, leaving a drain in for two weeks and finally needing to see the wound care clinic before it finally began to heal.
Emily remained positive throughout most of her journey, although she grew tired and frustrated with the repeated infections and slow healing process. Her faith and positive energy kept us all going. She went to Disney in Orlando with Make-A-Wish Organization that was the best week of her life. She is currently 16, a junior at Raytown high school, drives her beloved Ford Escape, works at Chick-Fil-A in Lee’s Summit and spends time with her beloved Chiweenie, Cinnamon. She still gets nervous every six months for her checks-ups, scans and lab work but has been in remission for a year and a half.
Isabella is 11 years old. In the past 4 years she has been diagnosed with Type 1 diabetes, Postural orthostatic tachycardia syndrome (POTS), Migraines, and Ehlers Danlos Syndrome. Though these diagnoses can be tough, time consuming, and physically exhausting she doesn’t let it get her down! She is a competitive dancer, plays volleyball, and is in student leadership at her school. She is a great testament to a kid who fights through any obstacle (diagnosis) thrown at her!
In 2015 as a 12-year-old competitive dancer, Jordan was diagnosed with a rare tumor in her femoral nerve. Her quad muscle was deteriorating & it was causing her not to be able to lift her leg. After numerous doctor appointments, rigorous physical therapy and no cure, she wouldn’t take no for an answer. In 2017 having found a surgeon at the St Louis Children’s Hospital, she was able to undergo a nerve decompression in her thigh and a nerve transfer surgery of her abs to her leg.
Jordan continued weekly physical therapy for another year & a half using her abs to control her leg in order to walk. Although she is not able to dance anymore, she has turned her determination towards school. Now at 16yrs old, Jordan still has the tumor and is still at the top of her class with straight A’s, recently becoming a student council member, and has found a passion for video & film class, even taking on a few competitions. She can’t wait to start Summit Tech Academy in the fall.
At just two months old, we brought Katie home from Children’s Mercy Hospital with a diagnosis of a rare and terminal bacterial meningitis. We were informed of the worst-case scenario. The only one that ever gave us hope was Katie. The next 18 years, she underwent testing and therapies, and then grade school, middle school, high school, soccer, volleyball, girl scouts, sleepovers, ball games and all the experiences parents hope for in an everyday, normal, and average child.
Katie’s army of teachers provided the best programs available to help her learn strategies and methods of learning that worked for her. I am proud to say she is graduating LSHS May 2020 and is now enrolled at Longview Community College. If any child could ever give another family hope, for the best outcomes for their child, it would be Katie. Katie is caring and kind, a registered voter, a member of Holy Spirit Catholic Church, a soon to be high school graduate and a great kid.
KyLeigh is currently 13 years old. She is someone who never lets her health obstacles define or defeat her. She has turned her health struggles in to teaching mechanisms and has helped others understand the difference between visible and invisible illnesses. She has won awards for writing essays about her journey battling Type 1 diabetes as well as Marfans syndrome which are just a couple examples of what she battles daily.
Lucas was diagnosed at 9 months old with pilomyxoid astrocytoma, this is a brain tumor that cannot be completely resected. He has overcome many obstacles that the doctor never believed he would. The biggest one is the doctors didn’t except Lucas to live much longer after his diagnosis. But Lucas is 6 1/2 years old! He does have delays from surgeries and treatments, and he has battled for his life during this fight. But today he is happy, playful, loving and full of life! For the first time in his life the tumor is stable, and Lucas gets to have some time off treatment. Lucas is a true miracle!
Nolan has been defying odds and expectations since he was born. He has a congenital neuromuscular condition that causes extremely low muscle tone, as well as Autism. He is social, smart, determined, funny and resilient. He inspires us every day!
In 2006 at 6 years old, Sydney was diagnosed with Transverse Myelitis, a rare neuro-autoimmune disorder. She was paralyzed from the waist down almost instantly causing spinal cord damage. After a month stay at Children’s Mercy and 3 months of intense outpatient PT/OT we were beyond thankful to see her walking again. Sydney had to overcome many obstacles recovering from TM and also being diagnosed with Ulcerative Colitis in 2007.
Even though Sydney was no longer able to participate in sports due to the spinal cord damage she did not let that stop her from finding her way!! She is an amazing young lady and such an inspiration to all!! In high school she participated in swim, cheerleading and leadership team. She is now at the University of Central Missouri pursuing a degree in Occupation Therapy.
Our adopted children are siblings that came from a place of domestic violence, drug use, physical and sexual abuse, and severe neglect. Since coming into our care, they have received the necessary medical care, nurturing relationships and love that every child should receive. They love swimming, riding bikes, playing at the park, going to the zoo and visiting their cousins. Our children are incredible examples of children who have overcome extreme circumstances and now thrive at the highest levels.