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Aubrey poses for the camera.
Aubrey is full of personality. She is an outgoing almost 11-year-old girl. She LOVES school and she enjoys things other 11-year-olds like to do, like hanging out with her friends and being on the phone. 11 years ago, if you would have described to me the type of person Aubrey is today, it would have been difficult for me to believe. Throughout my pregnancy with Aubrey, the doctors were trying to prepare me for what they thought would be my reality. The reality they expected for me was one without Aubrey. The many doctors I saw during my pregnancy all had the same prognosis; IF Aubrey lived past birth, she wouldn’t live past the age of 1. Now here we are, 11 years later, defying all expectations and living with hypophosphatasia.
Aubrey’s journey with HPP has not been the easiest.
Along with HPP, Aubrey has numerous other diagnoses. Hydrocephalus, hypotonia, craniosynostosis, Chiari malformation, and failure to thrive, just to name a few. Aubrey continues to amaze me every single day with her resiliency and positive attitude. I know Aubrey inspires those she meets and I know with her positivity and perspective on life, she will continue to make an impact over the years to come.
Through our journey thus far, Soft Bones has been there for Aubrey and our family when we felt so alone. When Aubrey was first diagnosed, I didn’t know where to start. I remember sitting in the hospital with Aubrey when she was days old and on a whim, I searched Facebook for hypophosphatasia. And from that moment on, I knew I wasn’t alone in this HPP journey. As Aubrey got older as well, it was life-changing for her to meet other kids her age who were “like her”. To this day, she truly cherishes the friendships she has made over the years.
Aubrey holding up a chocolate bar during a hospital visit.
Aubrey with a bouquet of flowers.
Aubrey all dressed up!
For those who are newly diagnosed, or feel lost, you are not alone. Keep advocating for you/your child with all that you have. Trust your gut, don’t give up fighting, and don’t give up hope. There will be very difficult moments but there will also be many moments of joy and celebration. Celebrate every accomplishment regardless of how big or small.
My hope for Aubrey as she gets older is that she doesn’t lose her fire. I hope she continues to advocate for herself and others. And as cliche as it is, I hope Aubrey follows her dreams and doesn’t let HPP hold her back!”
Aubrey with her mom, Amy.