Why I'm Running

I have never considered myself a runner, more like a slow jogger, but have been doing races on and off for the past 21 years. Whether it was a 5K, an obstacle race or the full 26.2, I have always run for me... to prove something to myself, to stay in shape, to keep healthy. This year I am running the 24 in 24 for others, specifically 15 children who are battling life threatening illnesses. This will be an endurance event like no other, but I am ready to be a part of something bigger than myself.


About Team Max

At our 19-week anatomy scan, we were told Maximus (Max) had some brain abnormalities. With more testing by 25 weeks, he was diagnosed with hydrocephalus and agenesis of the corpus callosum (ACC). The doctors also told us, because he was a male, there was a 10% chance he could have this rare genetic condition called, L1 Cam Syndrome. The doctors gave us all the worst odds that could be stacked against Max, including not surviving birth or dying shortly after. We did our research, we were scared and afraid of all the unknowns, but we had faith. We told doctors that Max was loved no matter how many seconds, hours or days of life he would be on this earth. Max was determined to write his own story, including when he would be born. He decided to come at 32 weeks and was born in the Special Delivery Unit at Cleveland Clinic. Once the NICU team got him settled, he was SMILING. I feel like Max was telling us, “It's okay Mom and Dad, I got this!” During Max’s NICU stay he needed a PIC line for TPN nutrition, he had a difficult bout with jaundice that didn’t seem to want to go away, neurosurgery at 34.5 weeks for a VP shunt, NG tube for nutrition, feeding therapy to learn to eat and of course genetic testing. Right before Christmas, Max was able to eat enough, his shunt was set just right, he could regulate his body temperature and we brought him home. Max spent 28 days in the NICU.

At two months old, we got a phone call that Max’s genetics testing was in and genetics wanted to see him. Max’s test confirmed that he had the L1Cam syndrome. The geneticists explained Max was going to be sickly, prone to seizures, never talk, never walk, live a sickly life and die early. The L1Cam gene controls everything neurological in your body. It was hard to believe this 6lb pound tiny baby that seemed to be doing okay other than bad reflux and some feeding troubles would have this life. Then, 48 hours later he was admitted back to the PICU. A month later he started having seizures. In Max's first year he had multiple ED visits, hospital stays, added complex care, more specialists, therapists, feeding clinic and diagnoses. Through all this, Max developed into a bubbly little guy. He worked hard at therapy, snuggled with everyone, learned to blow kisses and observe everything. At years two years old Max, had a gtube surgery and healed up well. He continued with physical therapy, occupational therapy and speech therapies. He was so happy through it all and continued to grow.

By summer/fall of October 2018, our happy little guy just shut down. He had a rough summer medically. One medical event seemed to be stacked on top of another. Every therapist, caregiver and close family member suspected something was seriously going wrong, Max wasn’t bouncing back. By the start of 2019, Max has lost most of his developmental skills he worked so hard for, no more eye contact, words, and sitting up was difficult. Max had a second neurosurgery to replace his shunt. He spent 2 weeks at Shaker Rehab to regain as many development skills as he could. Then he developed surgical complications right at the end of those two weeks. We spent most of 2019 in and out of the hospital with digestive issues. End of 2019 and into 2020, Max’s Epilepsy became difficult to control. He once again took developmental regression hits. Max’s Epilepsy specialist has worked very close with us to help find the right treatment so Max can thrive again. Max is working with doctors at Nationwide Children’s to address his digestive issues. Max continues with therapies to keep regaining skills. Max has worked hard with his teachers and school therapists via zoom to start showing us just how much he is ready to take on Kindergarten.

Despite the medical appointments, surgeries, hospital stays, therapy appointments and diagnoses, Max is a smiley, giggly and happy guy. He loves Mickey Mouse, music, books and swinging on his swing. He loves his wheels and is a daredevil at heart. He is a fighter, and he is our miracle.

$2,400.00 of $2400 goal

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Recent Donations

Your Favorite Child
8 days ago

So proud of you, Tubby!

$234.00
Brad & Marylin
9 days ago

We love you Karen! You have such a big heart!

Brenda R.
10 days ago

Good luck Karen!

$25.00
Tim & Nancy
11 days ago

Thinking of you! Sending love, blessings, and prayers!

Michael Martin
14 days ago
$120.00
Gina & Brian Koski
14 days ago

You are such an amazing person! Good Luck, Karen!

$25.00
Karlene R Bonnay
16 days ago

In memory of Carter Nedley

$48.00
Craig and Laurie
17 days ago

Prayers and love to all the children and participants!

$48.00
Julie Smith
17 days ago
The Shust Family
18 days ago

Have a great run for Max!

Juan J Galvan DDS
18 days ago
Sharon
18 days ago

You are so thoughtful and beautiful!

$120.00
Margaret Dellana
18 days ago

Good Luck!! You’re such a good person and I will be cheering you on!❤️

$24.00
Peggy and Ray
19 days ago

You go, girl! 🏅🏅🏅🏅🏅

Jordan & Dylan
19 days ago

You’ve got this Mom! We love and are so proud of you!

$40.00
Sondra Snode
19 days ago
$48.00
Dan and Lisa Nelson
19 days ago

You’ll do great!! We’ll be thinking of you!

$24.00
Anonymous
23 days ago
$50.00
Cindy and Duane
2 months ago

God bless you!

$35.00
Dona Taylor
2 months ago

You can do it! Such a great cause!

$24.00
Vincent Calabrese
2 months ago

Happy to help you reach your goal and the kids with special needs.

$48.00
Susan Frison
2 months ago

XOXO good luck!

$25.00
Cassie Testa
2 months ago

Good Luck! What a terrific challenge.

Julie Hubert
2 months ago

Good luck! Xoxo

Bette Mauller
2 months ago
Dylan
3 months ago

You rock Karen!

$25.00
Uncle Tom & Auntie Mel
3 months ago

We're with you in spirit as you challenge yourself for others: team Matt! God bless you for your efforts & keep you safe!

$240.00
Diane Hemling
3 months ago
$50.00
The Maullers
3 months ago

You’ve always had a big heart! Love that you are challenging yourself to help those who are challenged themselves. You got this!

$240.00
Joy Pollak
3 months ago
$24.00
Josette & Darlene
3 months ago

So proud of you !

$50.00
Beth Brinton Orlando
3 months ago
$48.00
Margo Kimble
3 months ago

What a great thoughtful sweet thing you are doing Karen, bless you! We are praying for Max and my God bless you both!!!!

$30.00
Jenny
3 months ago

What a challenge Karen I know you got this hopefully Max can go for it too!

$48.00