About Henry!

Henry Garrett

Henry’s journey began after findings on his prenatal ultrasound revealed polydactyly and enlarged echogenic fetal kidneys. Shortly after birth, his diagnosis of Bardet-Biedl Syndrome (BBS) was confirmed with genetic testing, and we set out on our quest to find him the best care available. The only clinic in North America specializing in BBS is located in Marshfield Wisconsin and was started by Robert Haws, MD in 2013.  The Marshfield Clinic opened our eyes to the current and novice treatments available to patients with BBS and gave us tremendous hope for Henry’s future. One such treatment is the genetic weight loss drug, Setmelanotide, for which Henry is enrolled in a clinical trial via Rhythm Pharmaceuticals with promising results! The BBS family association is another invaluable resource where those affected by BBS can come together to share their stories and learn about current and future therapies as well as support BBS research.  We are extremely grateful for the BBS family association, Marshfield Clinic, researchers, and pharmaceutical teams that help children and adults like Henry.  Donations to the Bardet-Biedl Syndrome Foundation will continue to support research into treatment and care for people affected by BBS as well as education and outreach to families, physicians, and educators.