Get Charlie to see Dr. Miller

*Update* 5/17/24

It’s been over a year since we put this Go Fund Me out there and asked for your help. We wanted to thank you all so much for your generosity which allowed us to go see Dr. Miller last year around this time which was crucial as she only accepts PWS patients who are under the age of 1! So now that Charlie is secured as one of her patients, we are so thankful to call Dr. Miller his main endocrinologist!! She is the most amazing doctor! From your donations we still have money leftover to make our second trip to Gainesville, FL to see her! Pray for us that we would gain valuable information, insight and encouragement. Please lift Charlie up in your prayers, that his life would be filled with hope and new medical breakthroughs would alleviate some of his hard symptoms. Pray that he would know and love Jesus first and foremost, and that nothing that comes along with PWS would stand in his way of what he wants his life to look like. Thank you!

*update*

Thank you all so much!! We were able to get Charlie an appt with Dr. Miller on May 24th! We are unbelievably blown away. Love you all. Thank you for helping us on this trip and to start to save for Charlie’s future PT/OT/DMI/Speech/Nutrition funds!!!

Hi everyone, Jake and I are raising money for Charlie to see Dr. Jennifer Miller. Charlie was born January 24, 2023 and was diagnosed with Prader-Willi Syndrome. Dr. Miller is the leading Endocrinologist in cutting edge Prader-Willi research and treatment. This would require us to travel to Gainesville, Florida. A rental van alone would cost $1,300 without the cost of gas hotels and food. We don’t know if our insurance would work there either. Right now we’ve been told that Dr. Miller is only accepting new patients who are under the age of one so it is imperative that we start the process and get on the waiting list to see her before Charlie is one year old- the earlier the better. Once we get in with her she can work closely with our local endocrinologist to monitor and alter Charlie’s growth hormone treatment depending on his blood work results etc. Even though our local Endocrinologist here in Pittsburgh is the head of the PWS clinic at Children’s he still recommended Dr. Miller at Charlie’s first appointment.

Dr. Miller is truly leading the way in treating hyperphagia among PWS kids. She not only is an incredible scientist and doctor, but she loves her patients and gives hope to the PWS community. And we believe that hope not only heals but it also gives permission to thrive. Our family needs all of the hope and direction in regards to PWS that we can possibly get.

From her website, “My research focuses on investigation of the etiology and possible treatment for obesity and metabolic abnormalities in individuals with Prader-Willi syndrome and early-onset obesity. I have been working towards achieving an appropriate treatment for hyperphagia for the past 12 years. I currently follow over 500 patients with Prader-Willi syndrome from around the world, and over 100 patients with early-onset obesity due to other genetic causes. I am working on clinical treatment trials to treat hyperphagia in individuals with Prader-Willi syndrome and early-onset obesity...”

Someone suggested that we do a GoFund Me. Our initial reaction was no way but here we are. Please donate if you feel led to contribute to our trips to Florida and any DMI or special therapies Charlie will need- we will be making a trust fund for him also. 100% of donations will go straight to Charlie’s care. We know God will provide for Charlie’s needs, as He already has. Jesus has walked with our family every moment. Thank you so much for praying for us since Charlie was born!!! Charlie- mommy and daddy love you so much and we will do everything we have to do to get you the best help possible!