Diagnosed as an infant with a rare genetic disorder, Jeune’s Syndrome, Aubree now age 10 has beaten many odds.
When Aubree’s parents brought her home from the hospital, they were told that their daughter had reached two significant milestones. She was born alive, and after several weeks in the hospital, she got to go home. Jeune’s Syndrome, also called Asphyxiating Thoracic Dystrophy, dramatically impacts a child’s ability to breathe. Without surgical rib expansion every few months, Aubree’s lungs would not have enough room to grow and develop.
While the family took countless precautions, Aubree contracted an illness when she was ten months old. A common cold proved to be life-threatening for Aubree. She spent her second Christmas at Children’s Hospital of Philadelphia in the pediatric ICU. Her battle for life included coding multiple times with fragile, collapsing airways during her ten-month stay in the hospital. She eventually needed a tracheostomy surgically placed in her airway to accomodate full-time ventilator and oxygen support. When Aubree was finally stable enough to return to Arkansas, she was in dire need of therapy. While she was fighting for her life, she missed out on many of the typical developmental stages of early childhood.
Due to being so medically fragile, home-based therapy was the only option. Christina Ruby, Children’s Therapy T.E.A.M.’s Board Certified Pediatric Physical Therapist, was the first therapist to make regular visits to the home. When asked to reflect back on her work with Aubree in those early years, Christina noted the challenge of doing pediatric therapy with a toddler attached to a ventilator.
For Aubree’s family and each of her therapists, learning to support Aubree’s development while managing a ventilator became the new normal. In Christina’s words, “It was challenging, because we all wanted her to move and explore as any child her age would, but she only had about 5 feet of tubing also putting tension on her tracheostomy.” Christina needed to ensure that PT activities did not disturb the connection to Aubree’s ventilator. When Aubree began to walk and eventually run, the ventilator had to move along too. It was a team effort as Aubree, Christina, and Mom, carrying the ventilator and guiding the tubing, all moved together through obstacle courses to develop Aubree’s balance and strength. The day Aubree’s lungs were strong enough to go without a daytime ventilator marked a milestone of new-found independence.
Speech-Language pathologist Connie Clark is another Children’s Therapy T.E.A.M. therapist who has been part of Aubree’s remarkable journey. For years, Connie supported Aubree in using an Augmentative and Alternative Communication (AAC) device before Aubree began using effective verbal speech to communicate. This is yet another example of how Aubree has beaten the odds. Connie continues to work on speech and language skills with Aubree including feeding and swallowing.
Reflecting on her collaboration with Children’s Therapy T.E.A.M. therapists, Aubree’s mother Audra shares, “Aubree is loved, cherished, encouraged, and pushed to be the best she can be. We are so fortunate to have this TEAM of therapists that do this with us. They are all fantastic. They are always compassionate, truthful, and honest in responding to my many questions.”
For Alison Boyd, Aubree’s T.E.A.M. Occupational Therapist, “Everything has been progress. I remember we had been working on coloring with a crayon for years. Now she is doing handwriting! She is reading! She loves to sing! She is so easy to love and be happy with because she just pushes that joy onto others and everyone she is around.” Aubree’s mother shares that her daughter’s joyful disposition has been a tremendous blessing for the family. While Aubree and her family persevere through so many challenges, they are sustained by Aubree’s joy, their deep Christian faith, and support from her therapy team.
Aubree’s story is debuting on KNWA/Fox 24 and also here on Children’s Therapy T.E.A.M. News and Children’s T.E.A.M.’s YouTube channel.
