As many of you know, our youngest daughter Lacey, is living with Prader – Willi Syndrome (PWS). Prader – Willi Syndrome is a very complex disorder that requires a lot of medical attention. On average, Lacey has three medical appointments in one week. With all the medical attention Lacey receives there is one doctor, Dr. Jennifer Miller, that has dedicated her life to helping Lacey and her fellow friends with PWS. Dr. Miller is known as the PWS super hero amongst the PWS community.
Dr. Miller is a Pediatric Endocrinologist with the University of Florida Pediatric Research Department and is a leader in finding a cure of PWS and has done multiple clinical trials. The latest one she completed Lacey had the opportunity to be a part of the trial. This is when we knew Lacey hit the jackpot with the best doctor we could have asked for. Dr. Miller goes above and beyond any doctor we have seen and is passionate about curing PWS and truly believes in their future.
Recently, Lacey has been asked to be a part of a pilot program that is leading the way for how patients and doctors will interact in the future. Dr. Miller and a team of experts have decided to run a pilot program for patients that are not able to see Dr. Miller every three months for their endocrinologist appointment but would like to have Dr. Miller has their primary Endocrinologist. The program is called Telehealth and families will be able to skype/facetime with Dr. Miller and get the appropriate medical advice/prescriptions as needed. This is huge for the PWS community and for Lacey! Currently we are only able to see Dr. Miller every 1-2 years because of travel. Being able to consult with her every three months would be game changing for Lacey’s short-term medical recommendations and potentially her future.
With that being said we are asking for donations to help raise funds for Dr. Miller in order for this program to be successful. She is only looking to pilot with fifty patients and if we can raise enough money Lacey will be guaranteed to be a part of this amazing new service. The financial goal to get the piloted started is $1,200 which is needed by the middle of November. All donations will be given to the MacPac Foundation; this foundation was started by Geraci family. Mackenzie Geraci is Lacey’s friend who we met at the University of Florida in October 2017 and together our families are looking to raise funds so that 50 others can be a part of this ground-breaking pilot program. Our families have been beyond generous sending gifts and cards to Peyton and Lacey and we thank you for that. If you are considering sending a gift this year for Christmas and/or birthday we ask that you donate to this cause in leu of gifts.
Andy and Dana Dunfee