Hi, my name is Jessica. I need help to get my daughter to her appointments at Mayo Clinic in Rochester, Minnesota. We just received the call that she will be seen in January 2022 but we also found out that insurance will not pay for any part of it.

My daughter, Caroline, has an undiscovered form of Hypophosphatasia. Hypophosphatasia (HPP) is an inherited disorder that affects the development of bones and teeth. Ultrasound screening for Hypophosphatasia began in 2005; Caroline was born in 2003. As an infant, Caroline was very sick. She cried nonstop, most likely because her bones were breaking during her growth spurts. I remember celebrating her each month of her first year because we just didn't know if she would make it to her first birthday.

When she was born, there was a placental abruption which caused both of us to almost die. Over the years, she has actually had many near death experiences because of her condition. Caroline has experienced fractures all over her body due to HPP, 4 emergency oral surgeries because the maxilla (upper jaw) was disappearing, lost a front tooth & had bovine bone implant in her maxilla, and had 4 very violent post op seizures that resulted in partial failure/extreme crisis of her Autonomic Nervous System.

In January 2020, one of her specialist groups at our children's hospital told us her life expectancy was just 2 more years because her autonomic nervous system failure is critical. The autonomic nervous system controls everything that happens in your body automatically. Examples include heart rate, blood pressure, temperature control, digestion, and more. Caroline's body no longer controls these things. At any given time, she can have an autonomic episode that requires medical assistance.

Caroline has been seen by our state's children's hospital for 10 years now. Her specialists are wonderful but are very confused by her condition. They can clinically prove Hypophosphatasia but insurance will not pay for the treatments without proving it genetically. Since Caroline's form of HPP has not been discovered yet, the doctors are unable to prove it on the genetic markers of the current known forms of HPP. Because insurance refused to pay for treatments, Caroline's condition has continued to affect more of her body, including her autonomic nervous system. More and more of her organs have been affected. It feels like each time we are seen, she has a new organ that must be addressed.

Caroline's complex-critical care pediatricians have sent her information to multiple larger hospitals hoping to get help. Mayo Clinic has accepted the task of discovering this form of HPP and getting treatments for her. However, insurance will not pay for this. We are required to pay a large retainer fee for medical expenses and will be self pay for all medical expenses, will have travel expenses & hotel bills, and more.

We know we are very blessed to get this opportunity, especially right here at the end of her predicted life expectancy. If you know us in "real life", you know Caroline is amazing. You know her by her smile, her intelligence, her beauty, or her sweet personality. We haven't been very vocal about all these medical issues because I have wanted her to life as close to normal life as possible, and truthfully because there are so many unknowns about her condition.

Caroline wants to become a cardio thoracic surgeon. I am certain she can achieve this if the doctors can find a way to stabilize her condition. We would appreciate any way you could help. Thank you so much!