Our lives changed this past fall. In September, our daughter Avery stopped walking and talking, began consistently shaking, and showed rapid eye movements. We soon went to Lutheran General for a three day hospital stay to figure out what was going on. They conducted what seemed like every test out there (CT, EKG, Ultrasound, Blood Labs, Urine Labs, etc). Nothing was found on the initial tests and through the process of exclusion, she ended up leaving with the diagnosis of acute cerebellar ataxia. She was given a dose of steroids and an antiobiotic for an ear infection. We were told she would be better in a matter of weeks and with the help of physical therapy. Unfortunate, she did not get better. Therapy did not help. Avery got worse. We knew something else had to be going on.
On Monday, November 19th, we took Avery to the emergency room at Lurie Children's Hospital. She was admitted quickly and seen by several specialists, including a team of neurologists. We needed answers. While they weren't the answers we wanted, we finally got some. Avery was diagnosed with Opsoclonus-Mynoclonus Syndrome (OMS for short). This disorder is 1 in 10 million. It is something we would stumble upon during our research the weeks before but never thought would be possible. OMS is associated with ocular, motor, behavior, sleep, and language disturbances. Avery underwent a CT scan the following day Tuesday November 18th to rule out any tumors, as this is an unfortunate common symptom with OMS. The CT scans showed the presence of a neuroblastoma on Avery's adrenal gland. This was a brutal thing for us to hear and shook us to the core. On Wednesday, November 21st, Avery had surgery to remove her entire adrenal gland. The surgery was successful and Avery was amazing throughout the whole ordeal. We also decided to donate some of her bone marrow to researches since her diagnosis is so rare and we hope it will help to get more answers for her, and for others.
As we learn more about OMS and how there are only thousands who have it in the world, we are especially thankful Lurie's caught it when they did. Avery has started an aggressive treatment plan that includes high dose steroids, IVIG, Cytoxan/Rituximab, physical therapy, occupational therapy, speech therapy, and behavioral therapy. We were going in once a month for treatment but will now begin going once a week for the near future because of the change to Rituximab.
There were points of anger, lots of asking why, and moments of despair. Now, more than anything, we are ready. We are ready to fight this. We have hope. We are with an incredible hospital, a dedicated team of doctors, and we have the best support system we can ask for. We ask that you join our team for St. Baldrick's and help us continue to raise awareness for OMS. Help our warrior Avery and so many other brave warriors in the world fight this.
Thank you again for your support for our family. We would like to thank Melissa McIntyre, Jamie Suckow, and Firewater Saloon for making Avery one of the honorees at the event this year.
If you’re interested in learning more about Opsoclonus Myoclonus, here are a couple good resources:
OMS Life Foundation
https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
https://www.aao.org/pediatric-center-detail/neuro-ophthalmology-opsoclonus-myoclonus-syndrome
-Michael and Helena
