November 15, 2014 by Benji
This blog post is a long time coming. My wife Sarah and I have thought about sharing our three and a half year old daughter Ellah’s story with people on more than one occasion. We haven’t because we thought that this could be an “invisible disease” and she would have the opportunity to choose as she got older if she wanted to share her story. We didn’t keep is a secret per se from people who are close to us, but we just didn’t talk to most people about this. It turns out we were wrong and that is why we are now sharing Ellah’s journey with agenesis of the corpus callosum.
Let’s back up; when my wife Sarah was 20 weeks pregnant, we had a routine ultrasound and the doctor told us that it appeared the baby had Agenesis of the Corpus Callosum (ACC). Agenesis means it didn’t develop. The Corpus Callosum is the main bridge of nerves in the brain that connect the right and left sides of the brain. The doctor advised us not to Google ACC because all the information out there at that time came from bloggers / parents writing horror stories and that there was no real accurate information on the internet. Due to the lack of clinical information available, he suggested that we should be optimistic, follow the suggested medical plan, and do our best to keep a good attitude. Being the defiant human I am, I immediately Googled ACC and read the first few sites that popped up. The doctor was right, It was all horror stories and things I didn’t want to hear; people talking about children who had passed away or were very low functioning with all sorts of horrific problems that I couldn’t imagine. I said uncle, and didn’t do any more research into ACC.
Sarah and I, along with our older daughter Na’amah and the help of occupational therapy, physical therapy and speech therapy, spent the next 3 years working on teaching Ellah to do basic things: learning to sit up, happened at about a year; learning to crawl, happened about 2 years; learning to walk, happened at about 3 years old. Even “simple” things like feeding herself did not come naturally and required months and month of help. She still struggles to use a utensil for eating, as coordination is one of the most difficult things.
All this time we thought we were alone, that there was no information available to us or the doctors about what the future has in store for us. through a series of strange events a year ago, we found out about an organization called NODCC,the National Organization for Disorders of the Corpus Callosum. The week before Thanksgiving 2013, my older sister Miryam was talking with a friend.He asked her who inspires her and Miryam replied, “Ellah, because no matter how difficult a day she is having, whether it’s another stay in the hospital over a cold, or a rough therapy session, or stomach issues, at the end of the day she smiles, laughs and is happy to be around the people who love her”. Miryam’s friend started asking questions and quickly asked “does your niece have ACC?” Miryam replied “how do you know that,It’s such a rare condition?” It turned out this friend had a daughter who passed away from ACC! Miryam mentioned how frustrating it was for us to have no information, and feel completely in the dark about Ellah’s condition and prognosis. He told her that while DMC Children’s is one of the best hospitals around, most doctors have not encountered ACC and we needed to search out the NODCC.
We immediately looked up, found and contacted the NODCC and we found a ton of information about ACC. We found out about a bi-annual conference, Facebook groups and other great support! Sarah and I went to the 2014 conference in Boston; we found other people going through the same thing,people who were able to give us advice and insight.It’s amazing what a difference a year can make. Ellah is growing physically and cognitively. She understands everything you say, has some signs and words she uses, is running and learning to ride a stage 2 bike;and while all that is happening, we are learning more about her condition, and how to best help her! Feeling like we no longer in in the dark and knowing we are not alone, has changed our lives.
Every person with ACC is different. We met some amazing teenagers and young adults with ACC, and have some new found hope and encouragement for what Ellah’s future may be. We also got a dose of reality about ACC being a hidden disease, or to clarify, it will not be a hidden disease. Studies have shown that even the highest functioning people living with ACC have issues with social cues, math can be difficult for many, picking up on subtleties in jokes and ironies can all be issues for folks with ACC, as well as , general problem solving. But many live ”normal” lives;they are doctors, lawyers, and accountants, artists, dancers and other professionals. In the near future, I am going to be posting some of the incredible things that have happened with Ellah, among them,her Neurosurgery, trials and tribulations with hospitals and her (seeming) superhuman strength, both physical and emotional…
There are two main reasons that we are sharing this information about Ellah. The first is that if a child is born today with ACC and their parent searches online, I want them to find positive and helpful information about ACC. The second is because of something we learned called Social Scaffolding, at the NODCC conference, we learned that the more people who know Elllah and about ACC, the more we can create an environment around her that supports her growth and learning.
UPDATE: this is being added after the original post was published. The Friendship Circle of Michigan has asked me to guest blog for them on topics about ACC and being a dad of a child with special needs – click here to see those posts.