Mains Family
William was born February 19, 2010 and shares his birthday with me (Carolyn), his Mom. We live in Suwanee, GA, just north of Atlanta with Dad (Keith), 13 year old sister, Hannah, 11 year old brother, Grayson and our dog, Wiggy.
William was diagnosed with PMD at 10 weeks old. At 4 weeks the pediatrician noticed signs of Nystagmus which started our search into what was going on with him. From there he had visits with the ophthalmologists and neurologists. This included many exams and 2 MRI's. The MRI's showed the lack of Myelin. After his initial diagnosis we did genetic testing which confirmed William has PMD and I am a carrier. We have no prior history of PMD in our family. William is currently under evaluation for adaptive communication devices. He is trying the eye gaze and scanner equipment. He also had Botox injections last month which have helped with stiffness.
William was born February 19, 2010 and shares his birthday with me (Carolyn), his Mom. We live in Suwanee, GA, just north of Atlanta with Dad (Keith), 13 year old sister, Hannah, 11 year old brother, Grayson and our dog, Wiggy.
William was diagnosed with PMD at 10 weeks old. At 4 weeks the pediatrician noticed signs of Nystagmus which started our search into what was going on with him. From there he had visits with the ophthalmologists and neurologists. This included many exams and 2 MRI's. The MRI's showed the lack of Myelin. After his initial diagnosis we did genetic testing which confirmed William has PMD and I am a carrier. We have no prior history of PMD in our family. William is currently under evaluation for adaptive communication devices. He is trying the eye gaze and scanner equipment. He also had Botox injections last month which have helped with stiffness.
William is a happy, silly, and very smart little boy. He is very opinionated and makes sure we know what he is trying to communicate. He gets around by rolling or army crawling. He has some head control but does not sit up unattended. He goes to tons of therapy each week and has been in pre- school for over 2 years now. He loves to ride the bus! He is a good eater and loves yogurt, his favorite food. Some of his favorite things to do are read, get into the refrigerator, walk in his gait trainer, and be outside. He has a new wheelchair which he steers manually and loves his new found freedom! He also loves to be in the water, either in the bath or in the pool. William is very aware of what is happening around him and loves to be in the middle of whatever the family is doing. He does not like to be excluded! We are thankful he is healthy in that he does not have any other health issues that would keep him immobile. He loves to go shopping with his sister and to watch any sporting event his brother is playing. Recently, he was asked to toss the coin at one of Grayson's football game!
William is such a blessing in our lives and I can't imagine life without him. We have met many PMD families virtually and in person and are thankful for these friendships.
William is such a blessing in our lives and I can't imagine life without him. We have met many PMD families virtually and in person and are thankful for these friendships.
