Throughout the night of February 24th we will have these amazing children and their families telling their stories. Below are the names of our Miracle Children and a brief summary of why they are apart of the Children’s Miracle Network at St. John’s. Make sure to come to our Dance Marathon to hear from these wonderful children and their families in person!
Brenna Westlake was born with a severe genetic skin disorder called Harlequin Ichthyosis (har-la-kwin ick-thee-oh-sis). Her skin has difficulty holding in moisture, keeping germs out, and regulating her body temperature; she can’t even physically sweat. Her skin is very dry, so she wears a thick lotion called Aquaphor. She spent 6 weeks in the NICU and has been hospitalized and had multiple surgeries at St. John’s since then. Brenna loves Minnie Mouse, reading, baby dolls and dancing, and she is so loved by her dad, mom and brother Connor. Brenna has the honor of being this year’s Children’s Miracle Network Champion Ambassador for Illinois! Things she enjoys: eating and more eating! She likes reading, playing catch with any ball, singing and dancing. Shake It Off by Taylor Swift and John Deere Green by Joe Diffie are her two favorite songs. She loves movies (Despicable Me, Toy Story, etc.) and Paw Patrol. She loves to play games too.
From surgery at 10 days old to countless doctor appointments to six years of weekly rehab, Brandon is a joyous 13 year old. Brandon was born with anal stenosis and has battled with bowel, urinary, and tube (such as in his ear or tear duct) issues for most of his life. He has undergone bowel reconstructive surgery and has been doing well despite a few hiccups along the way. Mom Angie says that he rarely complains and knows that he has to go through medical treatments to make him healthy. Mom also says that she is lucky to have a great medical facility in St. John’s Children’s Hospital, that can take care of all of Brandon’s needs, so close to home.
Antonea was diagnosed with Autism at the age of 2 ½. She had lost many of her words, she was withdrawing from interaction with peers and she had significant difficulty with eye contact. Immediately after her diagnosis was made, she began therapy. This included occupational therapy, speech therapy and developmental therapy. Antonea also has sensory processing disorder- which made simple things like being on a playground swing or getting her hair brushed very difficult. She was a sensory seeker as well, which meant she would throw herself on the ground often, or she would put hair clips on her arms to get that deep pressure sensation. The therapy appointments were frequent, and very exhausting for her emotionally. Many times she would scream and cry through the whole session. As necessary as these therapies were, they “stretched” her outside her comfort zone. It was gut-wrenching to watch her struggle with them. The therapies were intense and the schedule was a challenge. She attended 6 hours a week for 2 years. She has had to have an MRI with sedation, teeth surgery and eye surgery. Her eye surgery was the most difficult because she couldn’t (or wouldn’t) open her eyes for almost 24 hours. She couldn’t see, she was scared, and she was in pain. But as is always true with this girl, her ability to move through obstacles is very strong. Today Antonea is a happy kid with a sense of humor and enjoys any activity on the ice. She is on a hockey team and also does figure skating! These activities have helped her confidence, her self-esteem and her social skills. Her intense therapies, hard work and perseverance have brought her where she is today. St. John’s Children’s Hospital has been with us through it all. All of her therapies were there and all of her surgeries were there- she calls it “my hospital.” We are so blessed to have these experts in our community!
Levi has struggled since he was a very young age with adapting to the changes in everyday life. He has had difficulty with speech, eating, writing, adapting to social situations, and life has been a daily chore. Through these struggles he has had concussions, lesions that required stitches, and two prolonged stays in the hospital for nourishment issues. He has had numerous doctors’ appointments, and several visits to specialists. The number of diagnoses he has been given is dwarfed by the number of things we don’t know what to name. He is a medical mystery in many respects. However we have hope. We have through the help of many therapies, a great deal of adaptive tools, and several trips to the doctor been able to give him the tools to adapt to life. He has been able to finally go to school without melting down. He can talk to new people without losing it. While we still have difficulty adjusting to change, and struggle to process he is in far better shape today than he was five years ago