Why I'm Running
I run to be part of something that is bigger than myself. I have been following the actions of A Special Wish - Cleveland for many years, but living out of town I never get a chance to participate in its awesomeness. I finally feel prepared to be able to tackle this challenge. I run for the kids and the families that take on unimaginable challenges every day of their lives. They are brave and strong in their journey; I can do this to honor them. When I was growing up, a very special child unexpectedly came into my life. This child (and her family) opened up their hearts and showed me unconditional love when I needed it the most. Now this child has grown into a beautiful, heroic woman. In her everyday actions, she continues to show unconditional love and support to those around her. I also run to honor her.
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!

$996.00 of $1500 goal

Share this Challenger:


Recent Donations

Jim & Julie
4 days ago

$1 more than Joe!

$101.00
Mary Kaye O'Neill
4 days ago
$48.00
Virginia Ivec
8 days ago
$24.00
Pat Dumas
11 days ago

Yay, Kris! You can do it!👏🏻👏🏻

$25.00
Mary Dieringer
13 days ago

Glad to support such a good cause!

$100.00
Aunt Mag
15 days ago

Good luck Kris!

$100.00
Birch Cousins
15 days ago

Great job! You are awesome!

$24.00
Kleinberg
15 days ago

Good Luck! You got this!

$24.00
Mary Kate Miller
16 days ago

Good luck!

$100.00
Katie Hornack
16 days ago
$120.00
Mom and Joyce
16 days ago

Wishes and dreams, do come true! You’ve got this! I am so proud of you!

$100.00
M.
16 days ago
$50.00
Katie and Manny Santos
16 days ago

Go, Kris!!! You got this!!

$100.00
Tuck
16 days ago
$50.00