Do It For Delanie

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

Day 31 of SMA AwarenessThat’s a wrap! I hope that this month you have learned about SMA and what you can do to help out ...
08/31/2026

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!

https://www.curesma.org/

Day 30 of SMA Awareness Month Do It for Delanie Six years ago, we started our blogging page for Delanie. Completely out ...
08/30/2026

Day 30 of SMA Awareness Month

Do It for Delanie
Six 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.

This story is hers to share. Although she is non-verbal, she has so much to share with the world.
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. 💜

Day 29 of SMA Awareness Month Finding the “Good”We have lived through some really hard times. We survived days we though...
08/29/2026

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 💕

Day 28 of SMA Awareness Month More than SMA Although SMA is part of our daily lives, there is so much more to Delanie th...
08/28/2026

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 7 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 her verbal communication is very limited. 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 accessory. 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!

Most importantly, she’s is not afraid to be herself! SMA is a part of Delanie, but she is also so much more. 💜

Day 27 of SMA Awareness Month CommunityI really don’t have the words to explain how grateful we are for the community th...
08/28/2026

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. 💜

Day 26 of SMA Awareness MonthGoalsWe set goals for everything--big or small. Some goals are given to us by her doctors, ...
08/26/2026

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.

Day 25 of SMA Awareness Month HelpYou can ask anyone that knows me and they will tell you I’m as stubborn as they come. ...
08/25/2026

Day 25 of SMA Awareness Month

Help
You can ask anyone that knows me and they will tell you I’m as stubborn as they come. I’ve always took pride in being independent. I’m a problem solver, a goal seeker, and competitive to a fault. Nothing makes me more uncomfortable than admitting I need help. It makes me feel weak and at times it’s almost even humiliating.

Then... Delanie was diagnosed.

Talk about a learning curve. I went from “I’m going to be #1 Mom” to “I gave my perfect child a debilitating genetic disease with no cure”. Slap in the face. A wake up call. A stab in the back. I went from thinking I was capable of figuring anything and everything out to begging anyone to save us both.

SMA has humbled me.

Her diagnosis and medical bills nearly wiped us out within the first few months. I had to leave my job to care for her and we were down to one income. For weeks people beg for me to let them know how to help us, but my pride wouldn’t let me accept help. A few more weeks past, a few more failed tests, and still no guarantee of treatments. There was no way we were going to make it on our own. I felt undeserving, embarrassed, and so disappointment in myself... but Delanie needed more help than I could give her. Since then we have been blessed by countless people that have stepped up and helped us with donations, fundraising events, meals, prayers and unconditional love. We would not be able to continue the fight without everyone that has helped us along the way.

There is no reward for being #1 Mom. There is no prize for doing it all alone—it’s just lonely. There is no shame in asking for help. Everyone needs help. Some of us need it more than others. I used to think needing help made me weak, but honestly it makes us so much stronger. It builds bonds, friendships, and community. It unites us in a greater cause. So for everyone that has played a part in “helping” us through this journey, know we value you. We appreciate you. We are grateful for you. With every tiny improvement, we are so blessed that we get to share them with everyone who has helped us along the way.

Day 24 of SMA Awareness MonthSome Different Ways to Help the SMA CommunityWe do a lot of fundraising for Cure SMA and De...
08/24/2026

Day 24 of SMA Awareness Month

Some Different Ways to Help the SMA Community

We do a lot of fundraising for Cure SMA and Delanie's medical needs. However, we know how hard it is to be constantly donating. There are several ways to help through monetary donations and other avenues.

Vote
It's really that simple. Vote for those that support those with disabilities and that fight for accessibility. Human rights should be inclusive of all individuals. Be sure that you do your research before you cast your vote!

Prayer
We know that there are several people that pray for Delanie daily. We have no doubt that we would not be where we are today without the constant prayers we have received throughout her journey. Prayer gets us through the hard days and remind us to give praise on the good ones.

Be a voice (and a partner)
There has been several times that people have reached out to me and wanted to do more. The biggest thing that we need is for more individuals to be a voice for those fighting SMA and other disabilities. Share what you have learned about SMA. Discuss ways that you can make your community more accessible for those with disabilities. Volunteer for organizations that assist families and individuals with disabilities. Fight for inclusion in schools, teams, and work places. Sometimes being "there" does so much more than opening your wallet.

We are better people because of Delanie. It is our hope that we can make our world a better, kinder place for Delanie. Sometimes it is the small steps that lead to impactful change!

08/23/2026

Day 23 of SMA Awareness Month

T-shirt/Sweatshirt Fundraising Updates
Most t-shirts and sweatshirts are ready for pick up at Monogram Mayhem if you ordered yours through Facebook. Be on the lookout for your comment that your order is ready.

Those that ordered through me personally, I submitted those the last week and will contact and deliever when they are ready!

THANK YOU FOR THE CONTINUED SUPPORT! 💜

08/22/2026

The winner of the Ninja Slushie Machine is….

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Dunlap, TN

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