Classical HCU Steering Committee Member
Melanie is the mom to Masen, an energetic 9-year-old little boy, who was diagnosed with Homocystinuria in June 2021 at the age of 8 years old. Masen was missed at newborn screening. It was at a routine eye doctor’s appointment in February of 2021 where a very perceptive eye doctor noticed something going on with the lenses in Masen’s eyes. After diagnosis, Melanie and her husband, Ryan were devastated and terrified at what the future held and struggled immensely while waiting to find out what damage had been done with so many years going undiagnosed. Masen underwent two separate eyes surgeries (one for each eye) in April of 2021 to remove the lenses in both of his eyes. He now wears contact lenses and is seeing wonderfully with those.
Upon diagnosis in June 2021, Melanie didn’t hesitate to jump right into researching and finding connections with others. After finding HCU Network America, Melanie was able to gain helpful information on how to move forward and let go of some of the fear and has made lifelong irreplaceable friendships with others in this extremely supportive community.
Melanie hopes to be that same support to others while being actively involved in raising awareness for HCU.
Read Masen's diagnosis story here: https://hcunetworkamerica.org/Masen