Doctors

Doctors...when your child is diagnosed with a genetic condition, you get to know them real well. Honestly, ours have become like family to us.  Within Ellie's 2 years of life she has seen doctors in neonatology, genetics, cardiology, radiology, urology, gastroenterology,endocrinology, sleep medicine, orthopedics, ophthalmology, ENT (ear, nose and throat), developmental pediatrics, as well as her pediatrician and dentist.  That is quite the list for a 2 year old...

Ellie like other children with PWS, will continue to be followed by doctors her entire life.  David and I have vowed to seek and provide her with the best care possible.  It is really emotional for me to think about the team of doctors Ellie has fighting with her on this journey. Dr. Miller, Dr. Moreland, Dr. Mahaffey, Dr. Gault, Dr. Wood, Dr. Uy, Dr. Cole, G. Hall, NP, Dr. Pete, Dr. Beckish, Dr. White, Dr. Cooter, J. Jacobs, CPNP, and Dr. Turner.  Each one has impacted us and helped us along the way. Some, we spend a lot more time with, and they have have had a profound impact on our lives.

I certainly know that our pediatrician and all the staff were placed in our life for a purpose and God had His hand on it completely.  Dr. Mahaffey truly "gets" us and really listens to our concerns and latest research.  She and some of her staff came out to support us at our most recent second 5K walk/run to benefit PWS research...that truly meant the world to us.

Dr. Moreland is such a compassionate and intelligent doctor, that truly listens to her patients. She has been such a strong voice of reason, and goes above and beyond to collaborate with other experts in the field.  She also came to support us at our first 5K walk/run to benefit PWS research...I remember being in awe that she would come to support us.

And, Dr. Miller...there are no words to adequately express my gratitude and love for her.  We travel to Shands Hospital in Gainesville, Florida every 6 months to be followed by this amazing doctor.  She is the leading PWS Endocrinologist that has a caseload of approximately 400 PWS patients throughout the US and world.  She immerses herself in PWS research, and is a Principal Investigator for several clinical trial research studies, specifically targeting therapeutic treatment for PWS.  Dr. Miller is like no other doctor I have encountered.  I know she loves my child and will work tirelessly to find treatment to eliminate the challenges of PWS.

Ellie is such a brave, strong girl when we go to her numerous doctor's appointments.  I truly have come to respect the medical/healthcare profession in a whole different way.  It is critical you have a team of doctors that will listen to you as a parent, fight for your child, and seek to understand their condition or illness.  As a parent, you must advocate for your child, and appreciate these wonderful individuals called doctors.