An Urgent Update on Our Sweet Dixie (From Her Grandma)
Hello everyone. I am stepping in to write this update on behalf of my daughter because she is currently at the hospital with her hands completely full. As many of you know, our sweet granddaughter, Dixie, has recently come down with a severe case of pneumonia, and her mom has been right by her side around the clock.
First, our entire family wants to say a massive thank you to everyone who has loved and supported us over the last three years. Dixie has been bravely fighting SMARCA2, an incredibly rare genetic disorder with only three known cases in the United States. Watching my granddaughter endure so much at such a young age—and watching my daughter navigate this incredibly heavy burden—is the hardest thing our family has ever faced. But Dixie’s strength, and her mother’s fierce advocacy, inspire us every single day.
Right now, Dixie's condition has escalated, and they are facing some immediate and frightening hurdles. We wanted to keep you all informed on what is happening:
The Airway and Lung Complications
Even though Dixie does not eat by mouth, her doctors recently discovered that her esophagus is 75% filled with foreign material and tissue. This is a complication caused by how tight her previous stomach surgery (a Nissen fundoplication) is. This buildup is stretching her esophagus, pushing into her windpipe, and putting dangerous pressure on the surrounding blood vessels that supply her organs.
She absolutely has to have surgery to remove this. Her doctors originally wanted to wait a few weeks because her airway is so complicated and she is currently so sick. However, they are now expediting the surgery because Dixie's oxygen levels are dangerously dropping into the 60s and 70s while she sleeps, and she is continually aspirating. Aspiration is something my daughter manages daily—it caused 12 hospitalizations for pneumonia last year alone—but it has suddenly become much worse.
Furthermore, regular oxygen is no longer enough for our sweet girl. Dixie needs constant pressure to keep her lungs open. Her right lung is showing a loss of capacity and a lot of scar tissue, and her standard airway clearance machines are no longer working. Because of this, my daughter is facing the heavy decision of a tracheostomy for Dixie. She would only be a part-time user, but it would give her the respiratory support she desperately needs. It is a big, frightening decision, but a path we knew they might eventually have to walk.
A Mother's Intuition and a Medical Mystery
Amidst all of this, my daughter made a shocking discovery regarding Dixie's daily "seizures." A mother's intuition is a powerful thing, and she went to Dixie's medical team with a theory that these episodes had nothing to do with her brain. She felt a little crazy suggesting it, but desperate times call for desperate measures!
While in the hospital, they tested her theory: they put in an IV and took Dixie completely off her stomach feeds for 24 hours. Amazingly, she didn’t have a single episode. Not one!
After tracking her labs and blood sugar, her doctors now believe she is experiencing a very rare combination of complications from her stomach surgery, which is triggering a nerve response that mimics neurological symptoms. The kicker is, no one has ever seen this before. Because her condition is so rare, there is no roadmap, and her doctors are having to figure out how to treat it in real-time.
How You Can Help
In the next week or two, my daughter and Dixie will be facing a massive hospital stay for this expedited surgery, and to help this team of doctors finally work together to solve this medical mystery.
The financial strain of Dixie's ongoing care is incredibly heavy on their family right now. Traveling back and forth, staying at the hospital, lost wages from missing work, specialized equipment, and out-of-pocket medications add up so quickly. Ultimately, we also need to open up possibilities to get Dixie to larger research hospitals that can handle her rare condition.
We are so profoundly grateful for everyone who has already given; it has alleviated a huge burden for them. If you are in a position to donate today to help my daughter cover these upcoming expenses, it would make a world of difference.
However, we know times are tough, and we absolutely understand if you cannot give financially. There are other incredibly powerful ways you can stand with our family right now:
 Please Share: Sharing this post and Dixie’s GoFundMe with your friends, family, and community helps more than you know.
 Please Pray: Please pray for Dixie's comfort, her healing, and for her team of doctors to have wisdom as they navigate uncharted waters. Please also pray for my daughter's strength as she advocates for her little girl.
 Follow Along: You can follow Dixie’s story and leave words of encouragement on her Facebook page.
Thank you for your kindness, your generosity, and for not letting our family walk this road alone.
Dixie’s GoFundMe: <a href="https://gofund.me/3a8ea387f" target="_blank" class="" rel="nofollow noopener noreferrer">https://gofund.me/3a8ea387f</a>
Follow Dixie on Facebook: <a href="https://www.facebook.com/share/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.facebook.com/share/</a>

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