Roan will face many challenges in his life, challenges caused by Prader-Willi Syndrome (a rare chromosome deletion.) Many of these symptoms currently have no viable treatments. Hypotonia is one of the first symptoms of PWS and will affect the rest of his life. He will always struggle with low muscle tone. But, we can help Roan in treating his hypotonia. Hypotonia makes Roan's little body extra heavy for him to move. Imagine a 20lb weight sitting on every single part of your body, at all times. This is what it feels like for Roan to move his little body. Roan is currently 17.5mo and cannot sit up or crawl yet. While we work with things like early intervention and aquatic therapy, Roan is having a hard time and needs a more intensive therapy. Nearly 2 months ago, Roan decided to stop drinking all liquids, which can also be addressed during this intensive therapy. Not only will they push his little body and help build his strength up, they will also teach him many new ways to use his body to his benefit, to move, to eat, to drink, and much much more! This intensive therapy is an integral part of helping Roan live his best and brightest life.

If you'd like to donate directly to us without purchasing a shirt or sweater, please reach out to [email protected] or visit Roan's Fundrazr Campaign at: https://fnd.us/728GWc?ref=sh_6C7Fr6

To get updates on Roan, our fundraising efforts, ongoing campaigns, grants we've received, and to find out more about Prader-Willi Syndrome please visit: http://Instagram.com/theRAGjournal

Thank you for reading and supporting our beautiful, smart, incredible, and special little boy! Please share his story with your friends and family!