Meet Kaitlin

Bio:

Kaitlin can easily tell you her three favorite things: puppies, triathlons and country singer Lainey Wilson. Her parents insist she is 10 going on 20, and the fact that she is an only child might have something to do with that statement. But Kaitlin's spunk and passion for what she loves are what have pushed her to live life to the fullest despite being diagnosed with distal spinal muscular atrophy (DSMA), a rare and non-progressive form of spinal muscular atrophy (SMA) that affects her lower extremities and vocal cords. Kaitlin is currently the only patient that her Washington University physician at St. Louis Children's has seen with this rare disease.

Kaitlin did not have an easy start to life. Born with bilateral club feet it was soon discovered that she had bilateral vocal paralysis, which is related to her DSMA. When she was three and a half months old, she was sedated for several days while her medical team at St. Louis Children's figured out a plan. They realized that she needed a tracheostomy tube, or a trach, inserted to survive. It was during this time that Kaitlin was diagnosed with DSMA. Her parents then spent the next several years trying to keep Kaitlin healthy, going frequently back and forth from their home in Illinois to St. Louis Children's for appointments and hospital stays. In October 2015, when Kaitlin was almost 2, she accidentally pulled her trach out and almost did not survive. One year later, she underwent an eight-hour surgery to rebuild her airway using cartilage from her ribcage. After intense therapy, Kaitlin has now been trach-free for more than seven years and can eat normally, a huge milestone for her.

She recently had to undergo a surgical procedure for her back where more than 30 pieces of medical hardware were inserted and vertebrae were fused. While this procedure was intense and decreased her mobility, it was necessary for Kaitlin's spine and growth, and she has already gained two inches in height. After intense rehabilitation, Kaitlin is thriving and leading a fairly active lifestyle again.

No one knows exactly what the future holds for Kaitlin because she is already beating the odds against her. While she will likely require future surgeries on both her back and airway, Kaitlin is not letting that stop her. She is very competitive and enjoys participating in Dare2Tri events, which are triathlons that empower athletes with physical and visual disabilities to be physically active. Overall, her family feels that Kaitlin's care has been extraordinary, and they have loved being able to give back to St. Louis Children's. Their local community in Illinois has rallied twice to stock the shelves of the Center for Families with packaged foods for other families in need or crisis.

Because of You:

Kaitlin visits St. Louis Children's Hospital regularly and a portion of those visits usually include a visit to the Joe Buck Imaging Center. Kaitlin has a lot of anxiety when it comes to being transferred and moved during these procedures, but the team at the Imaging Center, which will soon undergo a major donor-funded renovation, always spends time calming her fears and explains every step of the process. Child Life Services, therapy dogs and the Center for Families are also a big help for Kaitlin and her parents during their time at the hospital. Donor support is essential to kids like Kaitlin, who are proof that you can do anything when you put your mind to it.

Watch Kaitlin's Story: