TeamTuckereb

10/07/2025

Come out to support tucker at Topping elementary school this Saturday.

UPDATE!!

LOCATION CHANGE!

Due to the overwhelming support and outpouring of interest to participate we have moved to a larger venue to accommodate as many as possible. Folks planning to attend should head to the staging area now located in the northwest parking lot of Metro North Crossing at Barry Rd and 169 Hwy (old Macy's parking lot). Staging begins at 9:45 and the parade will start promptly at 10:30.

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To all of our fellow first responders, motorcycle riders, Jeepers, car showers and hot roders! Heads up! We need your help!!

Let us tell you about Tucker's Parade…

The family of Tucker is asking for help as they coordinate a parade for him. Sadly, Tucker is being sent home this week from Children's Mercy, here in Kansas City, on hospice as he loses his fight against a rare genetic disorder called Dystrophic Epidermolysis Bullosa (EB), also known as "butterfly skin" and complications from it.

Tucker's favorite things are trucks, Jeeps, motorcycles, hot rods and emergency apparatus and so the family is organizing a parade to go by their house for Tucker to enjoy.

This Saturday, October 11th at 10:30 am the parade will begin at Winnetonka High School, 5815 NE 48th Street, KCMO and proceed past Tucker's nearby home. Be in place at the staging area by 10:00! The family would LOVE for a showing of public safety to support Tucker and help bring joy to this little guy.

Any questions can be directed to our page!

Help us out! Let’s give Tucker the final honor he deserves!

09/03/2025

Little photo splash of tucker man.

09/03/2025

💙🦋💙🦋

September is NICU Awareness Month.
Every year, nearly 1 in 10 babies is born prematurely or with critical health challenges that require specialized neonatal intensive care. Behind each of these tiny fighters is a family navigating uncertainty, hope, and resilience — supported by dedicated NICU teams who provide expert care and compassion.

This month, we honor the babies who have spent time in the NICU, celebrate the families who love them, and recognize the healthcare professionals who stand beside them every step of the way.

Whether you’re a NICU graduate, a family member, a healthcare provider, or a supporter, your story and voice matter. Together, we can raise awareness, build community, and shine a light on the journey of NICU families everywhere.

Join us all month long as we share stories, resources, and ways you can support NICU families.

09/03/2025

I know I havent been on here much so here is a life update on tucker man.

Tucker started his 2nd year of pre-K this year. He is loving every minute of his

Recently tucker was admitted to the CICU. Last week tucker had a really bad cough and was complaining of an ear pain. So we took him to urgent care. While at urgent care they did a chest X-ray and come to find out Tucker has fulid in his lungs and enlarged heart. So they told us we needed to go to the ER. While at the ER we discovered that tucker left ventricular was dilated and isnt pumping the amount of blood to his body. During those couple of days you could tell Tucker was having a hard time breathing. So on 8/29 we decided to put a breathing tube. The Dr have reassured us that was best decisions that would could make for him. Now we are taking it day by day with tucker. We are waiting to get an MRI of his heart to get a better understanding of everything. Until then we are just letting tuckers little body rest and get stronger.

We are so thankful for the prayers and support from everyone around us.




04/29/2025

When tucker was born there wasn't any treatments for people with RDEB. Now there are three different types of treatments for this community. I cant wait to see what amazing things this new treatment will do.

04/26/2025

Today was a very long day. We had EB clinic in denver. The day started at 7:45 this morning with dentist. They said tuckers teeth looks really good. After we were finished with the dentist we had some time to go shopping before our long appointment. Nobody understands how hard it is for a 3 year old to sit through 5 different doctors. Some of our goals we have from our appointment are to get his itching under control a little , get tucker back up to 29 pounds( tucker was at 29 pounds for a while and then he had the stomach bug and lost weight), work on independent walking ( he is so close to walking all by himself).

While we were in denver another little boy who has EB was also at the EB clinic and was staying at the same place that we were staying at so we got to cath up and hangout with them. I think its safe to say tucker has made a new friend.

We have come to conclusion that our next fundraiser is going to be going towards a wheelchair vehicle. So stay tuned for more details to come about that.

08/12/2024

Rest easy sweet beautiful girl. You are in no more pain. Please keep Caroline Georgia family in your prayers. 🦋🩷🦋🩷🦋

03/01/2024

Friends and family Im thinking about doing a fundraiser to help with cost going to the DCC this july.

You might ask what is DCC ? Well this is a conference for family memebers or people with EB to come together and learn information about EB. This year its in Atlanta. Dakota and I love going to these events because we always learn something new and we are surrounded by our friends.

If you want to give me ideas I would love to hear them. So far we have done T-Shirts, pens, decals and bracelets.

If you want to private message me you can.

Picture of tucker because I havent posted much of him lately.

02/28/2024

Today is rare disease day. If you would have asked me what EB was two years ago I would have told you I have no clue and I have neaver heard of it. Well today if you ask me what EB is be ready for a ear full of information and what you can and cant do with a child with Eb. Today I am honoring this little boy with his epidermolysis bullosa. Don't let anything get in your way baby boy. Mommy and daddy loves you 💙