My daughter, Finley, is 11 months old, and she has been diagnosed with Trichocon syndrome, which has led to the underdevelopment of her facial bones. During her time in the womb, her facial bones did not fully form, resulting in the absence of cheekbones, ears, and a small lower jaw.
To address her condition, we needed to distract her lower jaw to its normal position, which would allow her tongue to fall into place and open up her airway. This would enable her to potentially breathe through her mouth, eat, and make noises. Currently, her limited space restricts airflow over her vocal cords and out of her mouth, making it challenging for her to vocalize.
Financial concerns were a significant obstacle in getting the necessary treatment for Finley. Without assistance, we wouldn’t have been able to proceed. The support we received, including donations, made it possible for Finley to undergo surgery and receive the care she needed.
During this challenging journey, not having to worry about finances was a tremendous relief. It allowed us to stay close by during Finley’s surgery without the burden of hotel expenses. I had never been separated from Finley since the day she came home, so being just across the street from the hospital made a world of difference, especially during snowy weather.
The support and donations we received were the driving force behind Finley’s surgery. We are immensely grateful to the generous individuals who made this possible. The warm meals provided were a lifeline during our stay, particularly because I’m not accustomed to snowy weather, and venturing out for food would have been a significant challenge.
The practical support, such as the provision of a stroller to carry Finley’s medical equipment, was invaluable. It was a concern before our arrival how we would transport her from place to place, and the assistance we received was a huge relief.
The inclusion of a stroller, playpen, and a bouncer made life so much easier for us. The bouncer helped Finley get much-needed rest after her surgery, and it was truly incredible to have these items readily available without the worry of having to purchase them.
The small gestures of kindness, like a stuffed animal left at our door, meant a lot to us. These are moments that will stay with us and become cherished memories we can share with Finley as she grows up.
Finley has already made progress, with her jaw starting to take its proper form. She’s now making sounds, including duck calls, as her trach and vocal cords function more effectively. It’s an exciting development, and even though it sometimes feels surreal, we’re on the path to her recovery.
During her time in the hospital, it was challenging to see her attached to wires monitoring her heart rate and oxygen levels. The chance to unattach those wires and bring her here, where she can receive love, sleep, and be with her mom, was a significant relief for both of us. It allowed her to relax, heal, and move forward on her journey to recovery.