When we call Anna Owen, she is in the midst of cheerful chaos in her Tennessee home. Due to severe snowstorms, school was canceled for the week, keeping her four children at home. A unique situation that many parents might find challenging to handle, but not for Anna, who, for the past three and a half years, has been accustomed to managing unexpected situations. Indeed, her youngest, affectionately called Josie, is affected by a very rare disease that disrupts their family’s daily life. Toombow Kids takes you to meet this inspiring family, especially the mother-daughter duo who decided to smile at life despite the challenges.
Married for 13 years to her husband and a happy mother to little Penelope, 10, Harrison, 8, Charlotte, 6, and Josie, 3 and a half, Anna seems like an ordinary American, at least on the surface. However, her entire life took a new turn in 2020, during the Covid-19 pandemic and her fourth pregnancy. At her 24th week of gestation, ultrasounds revealed concerning images: Josie’s skull was abnormally developed. Three weeks later, further images confirmed the fears, with healthcare professionals unable to provide an exact diagnosis for the child’s condition. Immediately upon her birth, Josie had to be placed in intensive care, and the diagnosis was revealed: Josie suffered from a rare genetic disorder called Antley-Bixler syndrome. This resulted in various complications such as craniosynostosis, skeletal abnormalities, kidney and joint issues, developmental cognitive delays, and more. Experts were clear: Josie needed daily care. Thus, during her 6 weeks of maternity leave, Anna could barely enjoy her newborn as she was confined to the hospital for 2 months for Josie’s care. It was during this period that Anna chose to quit her job at a church to fully dedicate herself to raising her daughter once she was released. After what felt like an eternity, she was finally allowed to bring Josie home, a first meeting eagerly awaited by her siblings, who had only seen pictures of her in the hospital. And needless to say, they immediately connected!
“They all adore their little sister! Josie and Charlotte play a lot together: yesterday, for example, they took a bath together for an hour, and they didn’t stop laughing. Penelope is very protective, and Harrison acts like her bodyguard. It hurts them to see her with all her devices and medical equipment, and they help us, my husband and me, take care of her. Even though they are young, they are strong caregivers! I am very proud of them!”
This support is valuable since, in daily life, Anna can never let her guard down. Josie has many needs, and her mother can never be too far away from her. Every night, she or her husband take turns sleeping in her room in case she stops breathing. Moreover, every family outing requires some organization since it takes 30 minutes to prepare Josie’s equipment and the same duration to remove them once she’s back home. Paradoxically, despite her syndrome, Josie is a healthy little girl, while most children with her condition are generally very ill. Her daughter’s good humor and courage eventually led Anna to share photos and videos of her on Instagram, even though she had hesitated for a long time.
“I had already shared posts about my pregnancy, and I really wanted to share my happiness with others. But I was really scared to do it because since Josie is different, I was afraid that people would make fun of her. And then, little by little, I faced my fears and started sharing more and more about her. In the end, I received much more love than hate, so I continued! And the most beautiful thing in all of this is that I got to know many other moms with a disabled child. The more I shared content, the more I got to meet many. We share a strong bond that only we can understand. And I am grateful because, thanks to this account, I had the opportunity to connect with the parents of 7 different children with the same condition as Josie, even though they are very few.”
Throughout the day, it’s impossible not to see Josie smile. She is a life enthusiast who marvels at everything and has many passions. She loves her siblings, her parents, her nurse Danielle, playing with her dog, going outside, attending her four different therapies, ice cream, and pizza, among other things! Moreover, as she cannot chew but loves the taste, she pretends to eat small pieces of pizza to imitate her siblings. A joy that is sometimes disturbed by hateful comments that some people send to Anna. Anonymity makes people bold, allowing them to say whatever they want without fearing consequences. Some go as far as uttering horrible things like “she should die,” and as Josie’s mom says, it is important to take these comments seriously and block these individuals because, in any case, it is impossible to change the mindset of people writing such things or if they are too young to realize the horrors they are saying. Thus, she prefers not to waste her energy. Fortunately, Anna is fortunate to have a loyal community that rallies whenever needed to defend Josie. And if there’s one thing to remember about this little girl, it’s that she’s a fighter!
“The doctors told me she could never walk, eat on her own, and many other things that she can do now. She has an incredible inner strength that no one can stop. She never gives up, and it’s a true lesson in courage.”
If you’d like to read more inspiring stories like this, feel free to subscribe to the Toombow Kids newsletter to be informed of each article’s release. Moreover, to follow Josie’s daily adventures, visit the Instagram account @annaowen. Because, as Josie demonstrates, life is beautiful and deserves to be lived to the fullest!