Ten year old Kelly is having major surgery to enlarge her upper airway and decrease the pressure on her brain. She has lived with daily headaches for over a year because of her Crouzon Syndrome. This level of medical care is unavailable near our home in rural Montana, so our family will be traveling to Dallas. This fundraiser is to help provide for travel, lodging, and other costs while she receives treatment.
Kelly was initially diagnosed with Crouzon's at four months. This caused her skull bones to harden too quickly, not allowing her head to grow and putting pressure on her brain. After struggling for two years to find a craniofacial specialist who would operate with her atypical presentation, Dr. Fearon at Medical City Dallas was recommended to us. By that time, the increased intracranial pressure had resulted in a Chiari Malformation, where part of her brain was being squeezed into her spinal column. Fortunately, Dr. Fearon had pioneered a combination cranial vault remodel and suboccipital lobe decompression surgery that solved both problems at once. His team enlarged the back half of her skull and the area around her brainstem, allowing her brain to fit properly in her skull.
Despite an unexpected delay in the incision's healing, within a year, it appeared that Kelly was over her adventure with Crouzon's. Unfortunately, in 2020, Kelly began sleeping in later and later, and complaining of chronic headaches. A sleep study revealed obstructive sleep apnea. Her facial bones have hardened too quickly just like her skull did, affecting her airway, which is about one-third the size it should be in places.
To buy her time and protect her brain, she is on CPAP therapy, which has temporarily improved her sleep and headaches. However it appears to be less effective as time goes on.
The surgery is planned for February 2022. Dr. Fearon will be performing a LeFort III midface advancement. Her facial bones will be cut, and she’ll wear an external frame on her face for 6-8 weeks to stabilize the loose bones and move them forward as new bone grows in behind them. This will slowly increase the size of her upper airway. Once the bone has solidified, a second procedure will remove the frame.
Because of the need for two surgeries, the wound complications she previously had, and the distance from home, we hope to stay in Dallas for the 6-8 weeks it takes for Kelly’s face to be made big enough. Kelly’s whole family, including younger sister Karen and little brother CJ, will be traveling. Her dad will be taking a leave of absence from his job so that the family can face this difficult time together. Any donation would be appreciated to make this season easier.