Superhero Run for Belly Buttons

Superhero Run for Belly Buttons Saturday May 26, 2018 My precious Cecelia. Words cannot begin to express how much we love this little girl. Cecelia is now a beautifully healthy 4 year old.

Many of my friends and family know that she was born with a condition called Gastroschisis. What many of you don't know was how profoundly it changed our lives. We went to our 20 week ultrasound expecting to hear the news all new parents want to hear. Instead, it was at that point that we found out that our growing baby would be born with a portion of her bowels, and possibly other organs on the o

utside rather than the inside. We found out that she would be a fighter before she took her first breath and that while many babies born with this condition do well and recover, we may not get to bring her home. Many children with this condition also go on to have complications for many years. Before my daughter was diagnosed, I had honestly never heard the term "Gastroschisis." Like anyone else would do, we looked online to find some information. What we found was endless photos of babies with their intestines on the outside of their bodies and reports regarding treatment that were written in stale medical terminology. But we also found Avery's Angels Gastroschisis Foundation. We found hope and a connection with others going through the same thing we were. She doesn't fully understand the things she's been through, but she does know she is a Belly Button Superhero. These babies are called Belly Button Superheros because they are all little fighters. Taking on a challenge to recover and survive that many adults could not win. They also lose their belly buttons in the surgical process of repair. It has taken me 4 years to be able to open up about the challenges we made it through. I still can barely talk about it without going into tears. We also know it's time to give back to a foundation who gave us a ray of hope in a truly dark time. We are so proud and excited to announce the Superhero Run for Belly Buttons, a 5k fun run/walk that will take place in May 2015 to benefit Avery's Angels Gastroschisis Foundation.

Usually this time of year we’re hard at work making signs, looking for sponsors, getting the word out and putting ideas ...
04/17/2020

Usually this time of year we’re hard at work making signs, looking for sponsors, getting the word out and putting ideas together trying to make this year bigger and better than the last. As we all know we’re in a whole new world this year! We’ve decided that since we don’t know what things will be like come Memorial Day Weekend, we won’t have the run this year. We’re incredible grateful for everyone who has participated and we hope to see you next year. Avery’s Angels still needs our help, that doesn’t stop with social distancing, please go to www.averysangels.org and donate directly on their page today!!

And we’re still making signs today! It’s Cecelia’s 10th birthday!!!!!

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06/06/2019

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Mom, Ashley Huygens, has an especially potent message for todays’s focus... coping. 💚

“Our sweet little pineapple will forever by in our hearts. She showed us strength that no human has shown as before. Mila had a way of making any room light up. The bond her and her brother share will forever be missed.
I remember the day we found out about her condition, nearly feeling shattered as I had no idea what risks/chances we would be running bringing our daughter through a full term pregnancy. But as a he continued to grow, in those additional 21 weeks, I began to build an even stronger bond and excitement for the day we would welcome her on Earth and call her our little princess.
I remember the 48 days of being in the NICU, sleepless nights from beepers, alarms, monitors, medical personnel walking in and out, multiple attempts at feeds, paralysis, cries, not being able to hold her at first, dilated intestines, blood transfusions, no bowel movements, suggestions of surgery and so much more!!!
BUT, I also remember, how peaceful she looked sleeping, the twinkle in her eyes when she beamed up at us, her tiny fingers grasping on to one of our fingers, the first time she could keep food down for a day, the first time I could nurse her, the first time she POOPED, the first time brother met his little sister, the first time she made it out of her NICU room (for a fashion show), and the first time we heard the news about making it home!
I remember so many milestones after making it home with her! Her first real bath, snuggle in our arms in our couch or bed, her first foods, toys, shopping day, Thanksgiving, Christmas, New Years, Valentine’s Day.
Mila is by far the most independent LOVING child I’ve ever met! Though she be but little she is fierce! Preferred to feed herself, hold on to me while nursing, push your hand out of the way when reaching for anything, push to herself to crawl for further larger objects, and more. We always joke with their nanny, who has two boys of her own, looking back how Mila had 3 older brothers who will always look after her. It didn’t matter what she did or sport she played, but one day she’d become tougher than them. One thing that wouldn’t change though, is that mommy would still make her wear a bow!
Since the last moment we watched her take her last breath in the ER, and held her in our arms, God had shared her presence in so many beautiful ways. Tree frogs, pineapples, butterflies, the sound of music as the wind chimes go, memories, brother talking about her and pictures of her beautiful smile everywhere!
The pain of her losing her, I know, will never go away but her time on Earth was well lived. Her time in Heaven can only be even more beautiful! God only takes few so young and pure because they make Heaven that much more precious!”

The pictures are here!! A huge THANK YOU to Alyssa Jones! She did such a wonderful job of capturing all these precious m...
05/29/2019

The pictures are here!!
A huge THANK YOU to Alyssa Jones! She did such a wonderful job of capturing all these precious moments that we will cherish forever!
We know you all will enjoy these as much as we did!
Feel free to tag yourself in them and share them to your own pages!!

What a blast!!! Thank you to all who came to the 5th annual Superhero Run for Belly Buttons!!! We don’t time our race bu...
05/25/2019

What a blast!!! Thank you to all who came to the 5th annual Superhero Run for Belly Buttons!!!
We don’t time our race but we did want to recognize those who finished first!

1st place: Matthew Shepard
2nd place: James Hafley
3rd place: Unknown
4th place: Ryan Kasperski
5th place: Aiden Krueger

**we weren’t able to get the name of the gentleman who finished 3rd, if you know him let us know. We want him to be able to get his recognition!

Big thanks to Meteorologist Emily Kennedy and ABC 57 for using whatever pull they’ve got with the weather for us!!!  We’...
05/25/2019

Big thanks to Meteorologist Emily Kennedy and ABC 57 for using whatever pull they’ve got with the weather for us!!! We’re looking good superheroes!!

Our 1st Year or our 5th.... we are so excited and humbled to get to do this again!!!! Less than 3 hours to go!!! Meet us...
05/25/2019

Our 1st Year or our 5th.... we are so excited and humbled to get to do this again!!!! Less than 3 hours to go!!!

Meet us at the amphitheater at the commons at 8!

“Why are you running for Belly Buttons?”This is my daughter Cecelia, she’s 1 in 2000, 1 in 2000 babies a year born with ...
05/23/2019

“Why are you running for Belly Buttons?”

This is my daughter Cecelia, she’s 1 in 2000, 1 in 2000 babies a year born with their intestines on the outside of their bodies, through a hole in their abdominal wall. This is Gastroschisis. All of the babies born with this condition require immediate medical intervention to survive. During the process of repair they all lose their belly buttons, since the hole in the abdomen is closed surgically.

We call them Belly Button Superheroes; they take on the challenge of survival with a tenacity that most adults couldn’t muster.

So in two days we’ll run for Belly Buttons, join us! All profits go directly to Avery’s Angels Gastroschisis Foundation, the only non profit in the United States devoted to these babies and their families. To learn more about the amazing things they do go to averysangels.org

Make sure to register by May 12th to receive the free T-shirt!!
05/10/2019

Make sure to register by May 12th to receive the free T-shirt!!

Address

122 Days Ave
Buchanan, MI
49107

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