She has CHARGE syndrome, which is a rare syndrome. Each letter represents a different anomaly related to the syndrome. C-Colobomas (clefts in her retina); H-Heart anomalies; A-Atresia of the Choanae; R-Growth & developmental issues; G-Urinary tract issues; E-Ear malformations; and hearing loss. She is deaf/blind and also has Tourette’s syndrome, which is characterized by uncontrollable movements (tics). That’s the medical info on Meri, but none of that describes our beautiful girl.
From the beginning Meri has been a consistent little miracle. We were given lots of grim information on all the things she wouldn’t be able to do, but not one of those pieces of information included all the amazing things she would be able to do! She learned to walk, talk, play and form friendships. She took dance, karate and piano lessons. She graduated high school with her Advanced Regents Diploma. She went on to continue her education at the local community college. She finished an Independent Living program at Helen Keller National Center (HKNC). Those are just some of the things she did that we were told she would never do.
During Meri’s stay at HKNC she learned to keep an apartment, cook for herself and did a great deal of travel training. Now that she is home, she continues her skills. She currently works an internship 2 days per week at a gardening program, takes horseback lessons, takes classes 2 days per week at the local community college, and she goes out on the town with her friends taking full advantage of the travel training that she did at the center. She colors her hair in every different shade of the rainbow, loves to get lattes, go to the movies, go out for lunch and loves, loves, loves to buy books!! She is working on a novel and hopes to be a published author soon. This summer at the 12th International CHARGE Syndrome Conference, Meri was asked to be a speaker on the adult panel. There she shared the story of her life as an individual with CHARGE. She looks forward to the day when she will be able to move out and get an apartment of her own. Meri works hard everyday and meets every challenge head on. We are all so proud of her accomplishments. She is a self-proclaimed force to be reckoned with!
We couldn’t be more proud to be part of the NFADB family and we love to read all the remarkable stories of the amazing families that share in this journey of deaf-blindness with us.
For more information on CHARGE: CHARGE Syndrome Foundation