put yourself in the shoes of the solberg's
You have 3 healthy and busy boys ages 3 and under. They enjoy doing all the things boys do, like playing in the dirt, playing with cars and wrestling with each other. It’s spring time in MN, and the boys all get sick with a virus. Just as everyone is starting to feel better, the baby begins to walk funny and is tilting his head to the side. You seek medical help but the doctors don’t know what is wrong. His symptoms continue to get worse and now your baby can no longer hold himself up and he is inconsolable. You are terrified! After enduring repeated hospital visits and numerous tests while the doctors work to determine what is wrong, your baby is diagnosed with a very rare auto-immune disorder called Opsoclonus Myoclonus Ataxia Syndrome (OMAS), also known as OMS. This disorder affects only 1 in 10,000,000 annually and there is very limited medical knowledge of the disorder, and there is no cure. Your life and that of your family is changed forever!
Check out tell's story aired on fox 9 news!
what's next?
The Solberg family’s journey is just beginning. Tell looks great in the news coverage but he is not out of the woods yet. Tell’s current treatment plan includes very expensive medications to help stop his immune system from attacking his brain and outpatient therapy to help him to regain his strength, coordination and speech. He has good days and bad days and those bad days continue to be very exhausting for his family. He will visit Dr.Pranzetelli, an expert on OMS, in St. Louis on September 3rd for a long term plan. Over his lifetime he may experience relapses like the initial one that landed him at Children's and he may experience other challenges that come with OMS, like possible behavioral and learning disabilities. Prayers are welcome! He still has a long road ahead of him.
HOW CAN I HELP?This family has been through so much already! Join Team Tell in supporting Tell in his fight against OMS and in helping his family overcome the financial hardships that OMS has brought with it. We have organized several options for those who want to help financially. CLICK HERE TO VISIT OUR "HOW CAN I HELP" PAGE TO FIND OUT MORE...
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stay up to date with tell's progress
Tell's Facebook Page - www.facebook.com/OMSBabyTell
Tell's Caring Bridge - www.caringbridge.org/visit/BabyTell
Tell's Caring Bridge - www.caringbridge.org/visit/BabyTell
FIND OUT MORE ABOUT OMS
FIND OUT MORE ABOUT OPSOCLONUS MYOCLONUS SYNDROME AT THE NATIONAL PEDIATRIC MYOCLONUS CENTER WEBSITE...
http://www.omsusa.org/
http://www.omsusa.org/
OUR partner
A SPECIAL THANK YOU TO THE CHILD NEUROLOGY FOUNDATION FOR PARTNERING WITH US!