Why I'm Running
This is a great cause that benefits those who truly need our help.
About Team Skylar

Skylar was born in 2019 a healthy baby girl. Within 4 months, our lives changed forever when Skylar was diagnosed with Neuroblastoma cancer. With one tumor in the adrenal gland, we decided to wait and watch as sometimes it can resolve on its own. Unfortunately, when Skylar was 6 months old, she was diagnosed with a very rare neurological disease called Opsoclonus Myoclonus Ataxia Syndrome. This disease affects 2% of children with neuroblastoma and has a very wide range of symptoms. With that diagnosis, it was emergent to get the tumor out and immediately start treatment in hopes to not have permanent neurological damage. Skylar had a full tumor resection at 6 months old where they also removed her adrenal gland. Within weeks she started chemotherapy and IVIG treatment. This treatment went on for 13 months and she completed it and was considered in remission from the cancer. Shortly after completing treatment, Skylar had a relapse with her OMAS. Neurology had to step in and immediately start an aggressive treatment. She completed 5 straight days of high dose steroid infusions and once a week for 4 weeks of rituximab infusions and at home daily steroids. This is now to be continued with monthly IVIG and every 6 months of high dose rituximab until 2024 as of now. She continues going to speech therapy and physical therapy every 2 weeks in hopes to regain her mobility and to learn how to speak. Due to Skylar being on high dose steroids for a long period of time and missing an adrenal gland, she is adrenal insufficient. This is something to watch extremely close as adrenal crisis can be fatal. She was just recently diagnosed with yet another rare disease called Dyskinesia and we are awaiting leg braces in hopes it helps her low tone, balance, dystonia, and strength. We are also scheduled for some testing at Cleveland Clinic for some concerns that she has a seizure disorder as well.

Our second home has become a hospital room. Skylar is now 2 years old and she has been through more than most adults have in their entire life and we aren’t quite seeing the light at the end of the tunnel, but I know it’s coming. Throughout it all, she has taught us about strength and courage that we didn’t know was possible. She has remained happy and with a huge personality to keep us all hopeful. She continues to fight and she doesn’t let anything stop her. She loves playing with her big brother and anything Disney. She is my hero and I think ASW for giving us this opportunity to bring awareness and share our story! We are forever grateful!

$731.00 of $700 goal

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