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.

We are in need of‼️PRIVATE DUTY NURSES‼️Two of Delanie’s nurses will be taking new jobs leaving week days and weekends a...
03/12/2026

We are in need of‼️PRIVATE DUTY NURSES‼️
Two of Delanie’s nurses will be taking new jobs leaving week days and weekends available:

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

Part-time opening:
▪️LPN or RN position in Dunlap, TN
▪️Flexible shift times; weekends

Please reach out if you have any questions!!

You can apply through Maxim by texting or calling 423-301-9330

Happy Rare Disease Day! Did you know...• 300 million people are living with a rare disease worldwide • 72% of rare disea...
02/28/2026

Happy Rare Disease Day!

Did you know...
• 300 million people are living with a rare disease worldwide
• 72% of rare diseases are genetic
• 70% of those genetic rare diseases start in childhood
• There is no cure for the majority of Rare Diseases and many go undiagnosed
• Rare Disease Day improves knowledge among the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases!

Delanie fights a rare disease every day that has no cure. 1 in every 6,000-10,000 are diagnosed with Spinal Muscular Atrophy. However, being a carrier for SMA is not rare! 1 in every 40 people carry the SMA gene.

We love someone RARE! 💜

Today, we followed up with Delanie’s pediatrician about her leg pain. She got her bloodwork done like a champ and severa...
02/13/2026

Today, we followed up with Delanie’s pediatrician about her leg pain. She got her bloodwork done like a champ and several more extensive x-rays. Unfortunately, still no answer on what’s causing her intense pain. 🙁 There was some concerning finds in these x-rays with her bone density and some bowing of her legs that we will follow up with endocrinology and orthopedic. So more appointments to come, but still no relief. Although we are very thankful for no fractures, we are running out of ideas on what is wrong and how to fix it. Our next attempt will to be to rule out nerve pain with neurology.

She’s truly the happiest girl, even when she has a million reasons not to be. There is so much hope in that!

02/08/2026

Several have been reaching out to check in on Delanie so I thought we would update with what we know.

Delanie has still had sporadic episodes of severe pain. She saw neurology on Thursday and also got x-rays of her spinal rods hardware and her pelvis due to her repeatedly telling us that the pain was in her legs. Thankfully her spinal rods hardware was fine, but she does have a partial dislocation (subluxation) of her left hip.

We spoke with her orthopedic in Atlanta on the phone Friday after he was able to review her x-rays from Chattanooga. Subluxation of hips is very common in non-weight bearing, wheelchair users. We have been monitoring her hips for years. Her multiple hospitalizations and need to spend more time flat lying the last couple of months could have caused the increased pain, but her orthopedic is not 100% that’s the only issue. We agreed to follow up with her pediatrician and have more in depth x-rays of her whole leg to rule out any additional fractures. Best case scenario that there is no other findings and she is able treat her hip pain with medication and increased physical activity to help with the dislocation. We really don’t want to have to put her through hip surgery unless it’s our last resort.

Continue to be thinking of her in the days to come. 💜 She cannot catch a break!

Delanie’s been on homebound for school for a month. She’s finally back to her baseline repository wise! She’s been a bus...
02/03/2026

Delanie’s been on homebound for school for a month. She’s finally back to her baseline repository wise! She’s been a busy girl with lots of appointments and a few more to go this week.

We are eager to get her back to school, but she Delanie has started having episodes of agonizing pain. These episodes started over a week ago, and we are still not sure what is causing them. She has expressed it is her legs, but beyond that we can’t decipher much more. Delanie is a very tough girl with a very high pain tolerance. For her to complain it takes a lot which makes it even more heartbreaking when we can’t figure out the cause. We are praying that we get some answers or relief soon for her. We know she’s ready to be pain free! Be thinking of her. 💜

01/06/2026

1/5/2026

Delanie was discharged home late this afternoon. To allow her to recover, we will be switching her to homebound for school. Her poor lungs have been so sick, and she needs time to clear out the pneumonia completely before we risk any more illnesses. She’s still needing respiratory treatments every four hours and will need time to wean off 24/7 bipap support and oxygen. She will also have to build up her stamina to get back up in her wheelchair after being bedridden for nearly a month.

Continue to pray for complete healing for Delanie and that our home can catch a break from the constant sickness.

1/4/2026Delanie was moved from PICU to the floor today. She’s still having a hard time clearing the congestion, cough, a...
01/04/2026

1/4/2026

Delanie was moved from PICU to the floor today. She’s still having a hard time clearing the congestion, cough, and pneumonia. We are trying some different things with her pulmonary care to see if we can help clear it. She still hasn’t been able to come off supplemental oxygen so we are continuing on IV antibiotics. We will meet with her pulmonologist tomorrow for next steps.

For the first time in days, our sweet girl is having moments of feeling like herself again! We have seen that toothless grin today; it has been so good for our souls! Ma & Pa brought Wesley by this afternoon too. We have missed him so much!

1/3/2026Delanie has finally been able to come down on her oxygen support today, but unfortunately she still has not felt...
01/03/2026

1/3/2026

Delanie has finally been able to come down on her oxygen support today, but unfortunately she still has not felt much better. She is also having unexplained vomiting episodes. This admission has had so many curve balls.

They moved us to a new room today so we would have more space. We are hoping that in the next few days she perks up, and we can work towards goals for discharge. As always, we are on Delanie’s time.

01/02/2026

1/2/2026

Delanie had a rough night and required increased oxygen support. It’s carried over to a very up and down day. She has been very agitated and miserable. 😞 We hope sure gets relief soon. We miss her personality something awful.

Delanie’s had a stable day. No big steps forward, but no steps back either. She’s still needing continual respiratory su...
01/02/2026

Delanie’s had a stable day. No big steps forward, but no steps back either. She’s still needing continual respiratory support and oxygen, but not any more than she came in on last night.

I have finally been fever free for long enough to safely be with her bedside. We are hoping tomorrow is a day of progress. It’s been almost 3 weeks since we have seen her feel 100% like herself.

01/01/2026

Delanie’s waiting to be admitted to PICU for Human Metapneumovirus and worsening pneumonia in her right lung. Willie and her Granna are with her as I try to get over Flu A before I can safely be by her side.

This is not how we wanted to ring in the new year. 😩

12/21/2025

We are home. 🏡

Delanie was discharged this afternoon to continue her treatments at home. We will work towards getting her off her bipap in the coming days. She’s very happy to sleep in her own bed tonight.

Say a special prayer for the families still spending the holidays in the hospital. There are so many that are sick right now.

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Dunlap, TN

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