Would you like to correspond with Adults living with OMA? Check out their profiles below and connect with them!
Overcoming Tiny Obstacles
Lupita Williamson has a blog called Overcoming Tiny Obstacles. Lupita writes about her experience raising Patrick, a sweet and active boy with OMA, speech difficulties, developmental delays and Sensory Integration Disorder. She blogs about her experience with doctors, therapists, school, and always has some tips to help your child. She also tries to inspire others to hang in there in the emotional roller coaster that parenting a child with a rare health condition implies. She is happy to connect with her readers from around the world. Check out her blog here.
Whitney Steele has a blog called Mack's Mom and a faceboook page by the same name. Whitney writes about her experience raising Mackenzie, a very determined and independent girl, who was diagnosed with OMA at 15 months old, and Joubert Syndrome at 26 months. She has seen improvement thanks to the various therapies, horseback riding and dance and swimming classes. Whitney blogs not only to share Mackenzie's life with friends and family but to also connect with others around the world who are going through the same journey. Check out her blog here.
Facebook PAGE and Twitter
If you want to receive news and information related to OMA, then you should follow us on Facebook and Twitter. Our Social Media Team is posting daily helpful messages, in both English and Spanish. You can follow us on Twitter here, and you can follow us on Facebook by clicking "like" to our page here.
Nicole is 27 years old and lives in Canada. She was diagnosed with OMA in 1988 at 9 months old. She was part of the first research study in Canada for OMA. She currently holds a bachelor of arts (BA) in criminology. She didn't have support to help with the challenges of OMA until she reached college, because when she was young there was so little known about OMA so nobody really knew what to do. She made her own accommodations and became her own advocate. Coincidentally, all of the things she did for herself are actually the very things that leading research suggests be done today. She has a 7 month old baby girl who appears to be meeting and exceeding all milestones for her age and she plans to go back to work once her baby is one year old. Nicole is a true example that people living with OMA are able to do almost everything anyone else can. Nicole believes OMA is not easily understood so doctors and researchers tend to make OMA out to be something more than it really is. She enjoys educating and helping parents and carriers through the daily challenges of OMA by providing helpful hints, suggestions and encouragement based on her own experiences. You can connect with Nicole by emailing her at: email@example.com
Join the group Ocular Motor Apraxia (OMA) on Facebook. This closed group, was created by Stephen McQuoney, an adult with OMA from UK. The group has now more than 450 members and is constantly growing. This group is the best way to connect with other adults living with OMA, and with parents of children with OMA, from around the world. Everyone here is very welcoming and always willing to answer your questions and give you support. CLICK HERE TO JOIN. Or type on your Facebook search: OCULAR MOTOR APRAXIA (OMA) closed group.
Krystal McDonald has a blog called Blog.Deuley.com On her blog, Krystal talks about her experience homeschooling her two children, one of which has OMA. Cisco has also been diagnosed with Tubulinopathy. Krystal is happy to connect with her readers by email. Check out her blog here.