We Are Here for You
We understand that your child receiving a diagnosis of Ogden Syndrome can be life changing. We all have unique journeys, but the commonality is that our children share the same genetic syndrome. We are so glad you found our page and we want you to know that we are here to support you.
The emotions that derive from raising a child with Ogden Syndrome will come in waves. If your child is younger, it may be easy to become overwhelmed with navigating all of their healthcare needs; as parents who have been on the same path, we can help. For the parent/caregiver to the older child who just received this diagnosis after years of searching, you may be wondering, what does this mean for me/us? We hope that you will feel welcomed and find the answers you have been looking for.
Although our community is small, we know that we will continue to be the best advocates in helping our loved ones with Ogden Syndrome reach their fullest potential.
For most families who receive an Ogden Syndrome diagnosis, the geneticist may know little to nothing about this syndrome and may not be able to provide much in the way of guidance or a clear picture of the future. Hopefully, they will at least encourage you to make an appointment with a cardiologist, as heart-related issues, while not present in every patient, are the most immediately dangerous. Aside from making that appointment, take some time to let this diagnosis sink in.
It’s likely you’ve been on a long diagnostic journey that has now ended with little more than a name for what is affecting your child, and you could be thinking, “Where do I go from here? What do I do now?” Finding this website is a good first start. We also recommend connecting with our global patient support group, Ogden Syndrome Foundation and on these private Facebook groups: NAA10 Families Together and Ogden Syndrome-NAA10 Family Support Group.
While there are not many of us, you are not alone! Currently, there are about 100 diagnosed cases of Ogden Syndrome throughout the world.
Living with Ogden Syndrome
Living with Ogden syndrome will vary from child to child. Each and every one of our children is unique. We have different experiences based on who we are, our family dynamic, and the barriers we face raising a child with Ogden Syndrome.
A few of the commonalities we face in our community are delayed milestones, many are nonverbal, and some have behavioral challenges. Medically, our children face obstacles where cardiologists, neurologists, and ophthalmologists need to be involved.
Each journey is a unique experience. We hope that by finding our page you feel more prepared to navigate this journey.