Ocular Motor (Oculomotor) Apraxia Website

"...We still imagine, daydream, and visualize our desires and many of those imaginings become real..."

That's a quote from my mother-in-law, who wrote it couple days ago on the last Ezine of the Napoleon Hill Foundation. It's rather fitting that she is writing about belief, applied faith and visualization, just as I'm ready to see the product of my very own applied faith and vision. A project that I hinted about couple months ago. A project that is so dear to me mostly because of whom I'm doing it for.

When we began our journey of having a child with OMA, we realized that whenever we had a question, we would hit a wall. There was barely any information about OMA on the internet, let alone any books or other resources about it. Doctors? Not much help either. In their defense, OMA is a fairly new discovered rare condition, and not much research or clinical studies have been performed to document the few adults living with OMA today.

We live in United States and my son is a patient at one of the best hospitals in the country. If I couldn't find or access information about OMA, I knew other parents had to be in the same situation, with the same questions I had, with the same worries I had. This is why I began blogging couple years ago, sharing everything I knew about OMA, from the little I could gather from doctors, to the many experiences we were living by raising our son Patrick.

I have talked before about a closed Facebook group with more than 400 members from all over the world, who are either parents of children with OMA, or adults living with OMA. This is such a great resource that it's unfortunate that there are many people out there that don't have a Facebook account and so they will never be able to join it. There are others that have Facebook accounts, but our searches never led us to this closed group, which is what happened to me for couple years, and which is probably what happens to the people that never come across this blog.

What is more unfortunate of it all, is that there are not medical professionals, on this blog, or the Facebook group, or anywhere else, reading our questions, hearing our concerns or giving us advice. There are no experts anywhere that can see that we are families wondering what to expect and what we should be doing to best help our children or ourselves with OMA. There are no institutions, policy makers or researches, that can see that there are hundreds of families in great need of more studies being done in regards to OMA, and that we are willing and ready to help them out, because we know that by doing so we are helping ourselves. Nobody can see us, or hear us, or read us aside from ourselves.

This is why I have been working tirelessly the past couple of months to create a public website. These months can perfectly be described by this quote my mother sent to me recently:

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened" Matthew 7:7-8

I have been asking a lot for the past two months.

I have been reaching out to doctors, researchers and Institutes asking them for help to share with me any findings on OMA so that I could put it up on the website. I have been asking for individuals with OMA or parenting a child with OMA, who were willing to join my adventure and make this website real. I have been asking my husband to cook every day this past two weeks and watch our children more than the usual so I could focus on the website. I have been asking friends and family to buy jewelry from a dear friend, who kindly offered to donate a percentage of those sales to help me pay for website expenses and any other related projects. I have been asking God for his blessing and guidance every step of the way.

I asked and I received.

We needed to have a place, where to put all the important information about OMA, so that people would get the answers to the very basic questions that come to our minds when we first hear about this rare condition. We have that place today.

We needed a space, that served as an international network for all the people affected by OMA around the world to be able to connect with each other. From parent bloggers, to the great Facebook group, to adults living with OMA waiting for people to ask them questions. We have that space today.

We needed a page, where people could find gathered all the studies and reports done about OMA, that until now have been scattered all over the web. We have that page today.

We needed a source, where people could find tips that would help us know how to better raise our children with OMA. A place where adults with OMA would give us suggestions about practicing sports, going to college, getting a job, and even driving a car with such rare eye condition. We have this source today.

We needed a database, where people could find doctors who were familiar with OMA. Many people in many countries struggle finding a doctor who can give them a proper diagnosis, or answer basic question about this condition. We have that database today.

We needed a platform, where we could list all the medical community that are helping us with our cause, not only to thank them for their help but also to motivate other institutions, researchers, government, non profit and private organizations to join our cause. We have that platform today.

We needed a project, where the individuals who were eager to do something about OMA, were able to invest their time, passion and skills to actually do it. We needed to have their faces and their stories listed, so that other people that were ever interested in doing something about OMA, got inspired to take action as well. We have that project today.

We needed that and much more. And this is why OcularMotorApraxia.org exists today.

There is still a lot more work to do, not only to include all the information still missing on the website, but to tackle other projects that I'm sure will be born because of this platform we have created. It's great to see what we can accomplish, when we combine the people, and the efforts, and the time, and the skills, and the knowledge, and the mental attitude, and the faith. It's great to see what we can accomplish, when we have a major purpose driven by emotions and motives so strong and so meaningful to us. I did it because of my son, for my son, and for all the children, the parents and the adults with OMA who share the same journey my family does. I know those who have joined me have done it for the exact same reasons, too.

"...We still imagine, daydream, and visualize our desires and many of those imaginings become real..."

Indeed they do.

What do you imagine? What do you daydream? What do you visualize?

Which of these desires are you making real?