SOD/ONH Treatment
Donation protected
Our beautiful daughter was born on September 23, 2014. From all appearances she looked perfect! She was happy and healthy with 10 fingers and 10 toes.
When she was around 10 weeks old we begin to notice that she wasn't looking at us and smiling. So at her 3 month check up I brought it up to her doctor and he discovered that her optic nerves were small and we needed to head directly to an eye specialist when we left his office.
At the eye doctors they confirmed her optic nerves were small and that we needed to get an MRI as soon as possible. It was schedule for a couple weeks later which seemed like years were going to go by before our appointment would finally be here. But the day had arrived and she did really well for them.
About a week later we got the news to further confirm she had small and curved optic nerves. The next step was to see an endocrinologist. We were lucky and able to get in relatively soon! That is when we got the official diagnosis of Septo-Optic Dysplasia (SOD) and ONH.
In medical terms that means:
Septo-optic dysplasia (SOD), (de Morsier syndrome) is a rare congenital malformation syndrome featuring underdevelopment of the optic nerve, pituitary gland dysfunction, and absence of the septum pellucidum (a midline part of the brain).
It means that she will more than likely be blind, have to have hormone medication, be developmentally delayed, and more. It means regular blood work, testing, therapy and more!
We are working tirelessly to help her get the best care possible to help make sure she has the best chance possible. If you are able to help either through donation, sharing or sending some prayers we truly appreciate it. Thank You so much for reading our story.
When she was around 10 weeks old we begin to notice that she wasn't looking at us and smiling. So at her 3 month check up I brought it up to her doctor and he discovered that her optic nerves were small and we needed to head directly to an eye specialist when we left his office.
At the eye doctors they confirmed her optic nerves were small and that we needed to get an MRI as soon as possible. It was schedule for a couple weeks later which seemed like years were going to go by before our appointment would finally be here. But the day had arrived and she did really well for them.
About a week later we got the news to further confirm she had small and curved optic nerves. The next step was to see an endocrinologist. We were lucky and able to get in relatively soon! That is when we got the official diagnosis of Septo-Optic Dysplasia (SOD) and ONH.
In medical terms that means:
Septo-optic dysplasia (SOD), (de Morsier syndrome) is a rare congenital malformation syndrome featuring underdevelopment of the optic nerve, pituitary gland dysfunction, and absence of the septum pellucidum (a midline part of the brain).
It means that she will more than likely be blind, have to have hormone medication, be developmentally delayed, and more. It means regular blood work, testing, therapy and more!
We are working tirelessly to help her get the best care possible to help make sure she has the best chance possible. If you are able to help either through donation, sharing or sending some prayers we truly appreciate it. Thank You so much for reading our story.
Organizer
Brandon Snyder
Organizer
Hillsdale, MI
