Launch Buddies Podcast
Imagine navigating a world you’re unable to see – sounds scary, doesn’t it? Tune in as we unravel the mysteries and challenges of Optic Nerve Hypoplasia (ONH), the leading cause of childhood blindness. Our special guests, Joanna and her remarkable 13-year-old daughter, Chrissa, take us on their incredible journey of living with ONH. They reveal […]
Our story of the ONH dx
I found out I was pregnant on August 29, 2009. I was so nervous and so excited because all of my life all I ever wanted was to become a mom. I made my baby doctor appointment started taking prenatal vitamins and quit all of my bad habits. My First trimester was a breeze! At […]
Individual educational plan – IEPs.
Updated: Dec 12, 2023 IEP meetings are usually held once a year. You can amend an IEP at anytime to address new concerns/conflicts, add or remove services and request new evals, or review data, etc etc. Every 3 years the team is required to do re-evaluations for each service provided. IEPs are renewed annually, and the […]
ONH + Back to School 2023
I’ll be posting examples of letters and information sheets for our members to read as examples. A friendly reminder to Please NOT copy these personal letters word for word, that is plagiarism. Thanks!
ONH + Frequent Headaches
Some days I wish that I were a neurologist. I never grew up thinking, “I can’t wait to go to medical school to become a neurologist!” I was too busy growing up thinking, “I can’t wait to be become a teacher and mom!” Wahoo – goals achieved! Nothing fancy right? …just help the students/children of […]
ONH + Covid-19
Updated: Aug 15, 2023 ONH and the impact of Covid19 April 2020 is when the Washington school officials shut down all public school districts in our state. Like most states, school shifted to online learning and instruction while the pandemic ran rampant globally. Our children were taught through Zoom and other online platforms for months and […]
Why is ONH the correct medical terminology verse SOD? From MAGICs FB Page
Updated: Sep 4, 2023 “I See so much confusion between the terms ONH, SOD and De Morsier Syndrome so I wanted to post this from Children’s Hospital Las Angeles ONH research group… the label “SOD” is not accurate and is being abandoned by most medical professionals.” – Rachel Nawla 8/6/22 “We’ve posted this before, but here’s […]
How is ONH Diagnosed?
A common myth we hear far too often is that you must have an MRI (Magnetic Resonance Imaging) of the brain in order to get the official diagnosis of ONH. That is incorrect. An MRI’s purpose in the case of ONH is to diagnose any possible brain abnormalities. ONH is officially diagnosed during/after a full […]
3 Key Doctors
Getting a medical diagnosis of any kind can come as quite of a shock to most. Getting a medical diagnosis as a parent to a newborn baby is just scary!! It can be just as shocking but also comes with waves of guilt and sadness, anger and disbelief plus all sorts of grievances. It can […]
An ONH Journey
Optic Nerve Hypoplasia: A Journey, Advice, and Instructional Strategies If your child has been diagnosed with Optic Nerve Hypoplasia (ONH), you are not alone! According to Dr. Borchert for The MAGIC Foundation, Optic nerve hypoplasia (ONH) is the leading cause of blindness in infants and children. Together, let’s look at a brief overview of ONH; […]