Will is from Columbia. He is 15.
Diagnosis: Partial Agenesis Corpus Callosum
Will was born at full term with no complications. Will was quite possibly one of the happiest babies. He was always so content and easy-going. From the start, he loved people. We noticed that Will was not meeting developmental milestones, and at about 6 months of age, when he was unable to sit on his own, I brought it up to our pediatrician. We agreed to keep close watc,h and if by 9 months Will still hadn’t met some of the milestones that we would go see a developmental specialist.
By 9 months, Will still wasn’t able to sit on his own without assistance, wouldn’t hold his bottle, play with toys, or grip anything. But he still was the happiest baby and loved human interaction!!!!! Best smile you’ve ever seen. We took Will to Dr. Stroud (developmental specialist) right before his first birthday. This was a nerve-racking appointment- we not only met with her but also had a PT, OT, and speech eval (about a 3-hour appointment). It was devastating because reality hit of all the things he was not doing and not so much of what he was doing. We left that appointment with orders for an MRI. As we went home to wait for the MRI, you can’t help but let your mind jump to worst case scenario. Waiting for the MRI results was tough because we wanted to believe that it would come back just fine but in the back of your head, you know things just aren’t adding up. I got a message from Dr. Stroud at 9 pm one night (you know something has to be up to get a call that late at night) that said it wasn’t the worst-case scenario, but not what we were all hoping for. When I called Dr. Stroud, and she asked would you rather come in or talk on the phone, my heart sank. I knew this phone call meant there was a problem. I remember wanting to fall through the floor as she talked to me that Will had Partial Agenesis Corpus Callosum. I felt as though the world stopped.
Will is missing 20% of the back portion of his corpus callosum. The corpus callosum is the middle portion of your brain. This part of the brain helps to coordinate the left and right sides. This coordinates motor functioning, speech, and any activity that crosses mid line. Mystery solved to Will’s delays. We started right away with speech, physical, and occupational therapy. Within 6 months of our diagnosis, Will was a new child. Will continues with his therapies as well as swimming and horseback riding. Will is lucky that he has had no vision or neurological issues along with this- we continue to be followed by ophthalmology and neurology just as precaution.
Will continues making strides. He attends plenty of speech, occupational, and physical therapy. We’ve gained a deeper understanding of the learning process and recognize all of the milestones that he achieves. Although these milestones are typically not celebrated for other kids, it is important that we recognize these for Will because his are more memorable. Every milestone feels like such a success, like a miracle. As mentioned, rehabilital PT, OT, and ST are vital players in Will’s life each week. The sessions are fun and memorable, but the progress is slow. He can now form sentences. These small victories help Will feel independent so that he can spread his wings. Difficulties arise when outside people or children note his non-engagement and his meltdowns that are not controllable. Despite all of these things, Will continues to love everyone he meets. He loves bubbles and birthday parties. We have big plans for Will’s future, as he has proved time and time again that he can make it; he can do whatever he wants to do. He will do it, he will spread his wings. With Grace, he will be able to do it all. This hospital has been an amazing gift in our backyard; you never know when you might need the wonderful staff or services there.
Will loves playing ball, chasing the dog, running errands with mom, loving on his sisters, and horse therapy.
His parents are Danny and Molly Myers.