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TeamTuckereb

Tucker was born on December 24. When Tucker was born he had missing skin on his body. During our stay at CMH we found out that tucker was diagnosed with RDEB.

Tucker was then transported to children mercy hospital where he was admitted for over a month.

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 💙

06/02/2023

Tomorrow is the big day for tuckers fundraiser. Come to 816 tomorrow from 8-2 and Sunday from 8-2.

05/19/2023

We have been waiting for this day for a long time. I'm so glad this is coming out to help the EB community. I can't wait to see what this has in store for the community.

12/22/2022

My heart hurts for this family. Another beautiful butterfly went home today. I had the privilege of meeting Addi while she was at children mercy. we need to find a cure. I hate EB. Please keep this family in your thoughts and prayers during this time.

09/07/2022

Tucker had his first airplane ride yesterday he did so good. Today is a day of learning and helping our little boy be more comfortable.

08/24/2022

So life update with Tucker. We got approved to see the EB clinic in Denver. Our first appointment is September 7th. We are on the right track to help Tucker.

Picture of little man being happy.

07/21/2022

I want to give a huge shout out to my amazing husband. Thank you for always being in my corner. I'm so glad we had this opportunity to come to the Debra conference to learn all this new information. Some things we learned were how important Nutriton is for tucker. New bandage techniques. We are ready to be back home with bubby. I want to thank everyone that has donated to Tucker. Without the support from our family and friends Dakota and I wouldn't be able to come out here and learn all this new information about Recessive dystrophic Epidermolysis Bullosa and how to care for tucker.

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Kansas City, MO

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