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Do It For Delanie

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Dunlap, TN
Do It For Delanie

Delanie was diagnosed with Spinal Muscular Atrophy Type 1 (SMA) at 11 weeks old in August of 2019.

10/29/2025

If you know anyone, please send them our way!

10/25/2025

‼️PRIVATE DUTY NURSE NEEDED‼️
One of Delanie’s nurses will be taking a new job in November.

▪️LPN or RN position in Dunlap, TN
▪️12 hour shifts 5:30 AM to 5:30 PM (Central)
▪️Home and school care required

Please reach out if you are interested!

09/30/2025

Today is National Non-Verbal/Non-Speaking Awareness Day 💜

Being non-verbal or non-speaking does not mean being silent, voiceless, or without expression. Communication comes in many forms—through gestures, facial expressions, art, writing, AAC devices, sign language, and so much more.

This day is about honoring and uplifting those
like Delanie who communicate in ways beyond spoken words. It’s a reminder to listen with our eyes, our hearts, and have the patience to allow them to “speak” in a variety of ways. Inclusive communication is important!

Every voice matters. Every way of expressing matters. Today and every day we celebrate communication for all. 💜

09/19/2025

Delanie has been sick with a fever and respiratory symptoms for almost two weeks. We have been very thankful to be able to fight off the illness at home! However, the ballon that secures her g/j tube busted this morning and Delanie had pulled out her feeding tube shortly after I got to work. So even after all our attempts to avoid the ER the last two weeks, we ended up there today. 😫😫

With Delanie’s feeding tube going into her stomach and small intestine, it cannot be replaced without emergency care. Her tube completely came out of her small intestine making it more complicated to reinsert with a guide wire. After several attempts in radiology, they were finally able to get her feeding tube back into her small intestine without us needing it surgically placed. The last two weeks have us waving our white flag. 🏳️🥴

Most importantly, Delanie is back home and tolerating her feeds. Praying for an uneventful weekend and a much calmer upcoming week.

08/31/2025

Day 31 of SMA Awareness

That’s a wrap!
I hope that this month you have learned about SMA and what you can do to help out the SMA community. Although SMA Awareness month is recognized in August, it’s an every day affair in the Clayton household! We won’t stop educating, sharing, or fundraising!

I’m attaching a fundraiser to this post if you missed out on donating and would still like to this month. As always, we appreciate everyone that prays, donates, and shares Delanie’s journey. If our posts help one other person, it would all be worth it!

08/30/2025

Day 30 of SMA Awareness Month

Do It for Delanie
Five years ago, we started our blogging page for Delanie. Completely out of my comfort zone, I started writing small pieces into our lives with Delanie. We wanted to raise awareness to the hardships and struggles of raising a child with disabilities, but also highlight the beauty that comes in the ordinary since her diagnosis.

We are realistic people, and we knew when she was diagnosed that it would be filled with highs and lows. However, there was no guide book that told us how to make all pieces fall into place. It has been trial and error, constant adjustments, networking, and living through the unthinkable to get us to where we are today. We are hoping after the last couple of years we have become a place for awareness, but also a resource to families that need help and guidance. We have enjoyed getting to interact with so many people near and far since we started sharing her story.

Delanie is our motivation for everything, that’s why Do It For Delanie was and is so fitting. Her journey has been an honor to document, but the best part is that the journey isn’t over. 💜

08/29/2025

Day 29 of SMA Awareness Month

Finding the “Good”
We have lived through some really hard times. We survived days we thought we would never get through. We watched as doctors struggled to intubate Delanie’s tiny body. We have held her hand through hundreds of appointments and tests. We have kissed her head as she is wheeled into surgery. We’ve had some bad, gut wrenching, heartbreaking days.

Whenever Delanie was diagnosed, there was no good news. We knew she would have a hard life. We had several days of thinking “why us” and anger. As much as that day hurt, we didn’t want to live every day feeling like that. We learned very quickly that the bad days makes the good days that much sweeter.

We make a daily choice to celebrate the good—no matter how “small”. Not because our lives our perfect, but because we have learned to value every second we get to spend together. Her journey may be hard, but she doesn’t have a sad life. She’s our miracle even on the hard days 💕

08/28/2025

Day 28 of SMA Awareness Month

More than SMA
Although SMA is part of our daily lives, there is so much more to Delanie than just her diagnosis.

Delanie is a sassy 6 year old. She doesn’t hide her emotions and she is very quick to let us know how she feels about something. She is very vocal even though we still have no idea what she’s saying to us most of the time. Her personality fills a room. Her infectious smile is very persuasive and keeps us wrapped around her finger. She is a tech guru and is Ed Sheeran’s number one fan! She has a deep love and connection with music. Her wheelchair is her favorite activity of her day. She is a busy bee—always tinkering with toys or rolling around in the floor. She thinks she is big stuff when she completes tasks independently! She is a daredevil and fearless, except for her hatred for doctor offices. If we’d let her, she would live in the bathtub or pool. She loves to read books. Her laugh makes my heart melt. She thrives on attention and praise. She loves school and pushing the limit!

SMA is a part of Delanie, but she is also so much more. 💜

08/27/2025

Day 27 of SMA Awareness Month

Community
I really don’t have the words to explain how grateful we are for the community that we live in or those that keep up with us afar. Our “village” is full of self-less, compassionate, giving individuals that do so much behind the scenes. We have been blessed by many new faces and friendships since Delanie’s diagnosis. Our community has made sure all of Delanie’s needs are met.

Our community has helped us build a ramp, purchase a medical stander, pay off medical bills, and given Delanie everything she NEEDS even when insurance has told us “no”.

We have been blessed to provide Delanie with the care she deserves by the kindness and generosity of people far and wide. Without our community, we would not be able to fight this fight! A simple “thank you” for everyone that has stepped up to support her just doesn’t seem adequate.

I’m a firm believer that God gives us all different skills and abilities to use to show his love. We have seen God through many different people we have encountered. 💜

08/26/2025

Day 26 of SMA Awareness Month

Goals
We set goals for everything--big or small. Some goals are given to us by her doctors, specialists, or therapists. Some goals we create on our own. We want Delanie to be the best version of herself that she can be. We have no idea what that looks like. With new SMA treatments, we are in uncharted territory. We don't know what her life will look like in a year, 5 years, even 10 years from now. All we can do is work with the cards we are dealt at the given time.

Before we were setting goals, it was so easy to get caught up in all the things she couldn't do. It is and was so hard to watch her struggle to do simple things that we take for granted every day. However, we have learned that every little thing she does is huge in comparison to the list of things she can't. We live in a time where we have the opportunity to fight a disease that just a few years ago had no treatment. We get to watch improvements instead of regression. She is still here fighting, learning, and progressing. That is the biggest gift we could ever be given. So every goal, big or small, is a reminder that she is a living miracle. It doesn't get much sweeter than that.

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