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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.

12/21/2025

Delanie was able to come off supplemental oxygen a couple of hours ago!🎉 That’s a huge step in heading home, but the persistent cough will be the true test tonight. Pray that she can continue to hold her own on her bipap with the relentless coughing. That’s our biggest concern right now!

She’s been fever free for most of the day and her chest Xray is improved compared to yesterday. All great things towards her feeling more like herself!

Pray for her cough and no setbacks tonight!

12/19/2025

Delanie’s had a good, stable day. We were able to lower some of her supplemental oxygen and she has gotten her personality back sporadically today. She’s still fighting off fevers and coughing fits, but it’s been a small improvement from yesterday. She’s working hard towards getting home in time for Santa.

Mrs. Moore stopped by and delivered Delanie all of her Christmas goodies from school 🎄🎅🏼 She has enjoyed looking through the cards and gifts from her classmates. We are so thankful she has such a thoughtful teacher and friends this year! ❤️

12/18/2025

Delanie was admitted to PICU a couple of hours ago. 😞

Last night, Delanie had a vomiting episode in which she aspirated. We maxed out respiratory support we could give at home and made it to the ER shortly after midnight. Between the aspirated pneumonia and testing positive for parainfluenza, she’s miserable and we need the extra hands to care for her. As always, she being spoiled and cared for by the very best.

Every admission sucks, but this time of year just stings more. Praying our girl is happy and healthy soon.

12/17/2025

Delanie has unfortunately come down with a respiratory infection. She’s been bipap dependent all day and requiring supplemental oxygen. We were able to get in with her pulmonologist and start an antibiotic today. We are hoping that will allow her to fight this off without an admission to PICU in the coming days.

Once again, Delanie missed out on her school Christmas party. 😞 We hate that she misses out on so much, but we are praying that she will be able to celebrate Christmas at home. This time of year is so hard.

11/11/2025

Spinal rods lengthened ✅
AFOs adjusted ✅

Great report in Atlanta today! 8 months post-op from her second set of spinal rods and thriving!

11/08/2025

6 YEARS.

“So the story goes
There's always highs and lows
There's things you can't explain
Like findin' beauty in the pain”

It has felt like a blink of an eye and a century all at the same time. Today, marks 6 years since Delanie recieved Zolgensma— her 2nd chance at life. She has been through the good, the bad, and the ugly, but without Zolgensma her story would have ended years ago. We still hold on to hope for a cure for SMA, but today we celebrate the $2.1 million treatment that has given Delanie the chance to fight. 💜

Happy Dosing Day, Delanie Brooke!

11/02/2025

We are still in need of a‼️PRIVATE DUTY NURSE‼️
One of Delanie’s nurses will be taking a new job in a week.

▪️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 have any questions!!

You can apply through Maxim by texting or calling 423-301-9330 or you can email our case representative at molwright@maxhealth.com !

The sweetest girl who will immediately steal your heart! 💜

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!

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