Why I'm Running
I’m running the 24 in 24 in honor of my niece Vivi girl. Viv was a 2018 wish kiddo, and last year’s run was dedicated in her memory. A Special Wish Cleveland Chapter is truly a life changing organization for our neighborhood families whose kids are struggling with life threatening illness. Let’s run and raise money for all these wish kids!
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!

$2,022.00 of $700 goal

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Recent Donations

Gesu Catholic School

In Honor of Vivi Zaratsian

Maeve and Nora
5 days ago

Go Liz! ❤️

KoskiDePaul family
5 days ago

In honor of our love for Vivi and hope for Skylar.

11 days ago
Katie & Jeff Detwiler
17 days ago

In honor of Vivi Zaratsian and all children affected by cancer.

Conor and Mal O’Sullivan
1 month ago

In Memory of sweet Viv 💕 Go Liz Go!!!

Patti Leonello Hoffman
2 months ago
Julie and Mike Marjenin
2 months ago
Mary and Tom Hartnett
2 months ago

Good luck, Liz!

Beth Kloos
2 months ago

In Memory of Viv

Peter and Mary Kay DePaul
2 months ago

Despite her cancer, Vivi had the best life possible. A Special Wish was a big part of this. Kids like Skylar deserve the very best. Thanks for running Liz.