10/17/2025
Hi friends and welcome to this page.
This is my first post, and it's going to be long, honest and vulnerable. My hope is to give you some background on our family, on Braxley, and on why Nathan and I created this space.
This page will hold both where we are today and the journey that brought us here--the highs, the lows, and everything in between.
Nathan and I were married in October 2018, full of excitement for the future. Just 14 months later, everything changed--Nathan was diagnosed with AML (acute myeloid leukemia).
At 25, I faced the very real possibility of becoming a widow. But Nathan was a warrior and fought with everything he had, and by God's grace and science, he won. He has now been in remission for over 5 years.
In 2022, with Nathan two years cancer-free, we felt ready to grow our family. When we found out we were expecting, I remember thinking our luck was turning--that finally, life would smooth out. But life had other plans.
At 37 weeks pregnant, an ultrasound revealed something unusual: our baby's bladder was enlarged, and her kidneys showed signs of hydronephrosis.
No one could fully explain what it meant, but the plan was to induce at 39 weeks.
Braxley, however, had her own timeline. At 38 weeks and 4 days, she arrived--and the moment they placed her on my chest, she peed. I cried with relief, thinking that meant everything would be okay.
But soon after, doctors discovered something else unusual: her pupils were fixed and dilated. It was concerning, but otherwise, she seemed healthy. We went went home, blissfully exhausted new parents, clinging to joy.
Then came the feeding struggles.
First, we thought it was my milk supply. Then we tried formula. She gained... until she didn't. At her weight checks, I celebrated two ounces in two weeks--but the pediatrician knew something was wrong.
As a parent, hearing the words "failure to thrive" for your baby is a punch in the gut.
I resisted at first, insisting nothing was wrong with my baby. But I agreed to have her admitted.
Soon after admission, a speech therapist noticed Braxley breathing quickly while feeding and suggested a heart evaluation.
An ECHO revealed she had a PDA (patent ductus arteriosus) that hadn't closed after birth. The doctors planned a catheter procedure, but when the team attempted it, they discovered Braxley's PDA was five times larger than anything they had ever seen.
The only option left was open-heart surgery.
I cannot describe the anguish of handing over your 3-month-old to a surgical team, praying she comes back to you. I couldn't bring myself to sign the consent form--Nathan did it for us.
Hours crawled by. We cried, we prayed, we leaned on family and friends. And by some miracle, she made it through.
Just weeks later, genetic testing confirmed what her doctors had suspected: Braxley has Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS), caused by a rare mutation in the ACTA2 gene.
MSMDS is devastating. It affects every smooth muscle cell in the body--heart, lungs, blood vessels, bladder, gut.
Children with this disease often face strokes, heart complications, and countless hospitalizations. Many do not live past early childhood. It is a life-limiting, terminal diagnosis.
Hearing this broke me. We grieved the future we thought we'd have. We grieved the childhood we wanted for Braxley.
For a long time, we kept it a secret. I didn't want her treated differently. But mostly, I didn't want to accept the truth.
But slowly, something changed.
In 2024, our geneticist sent me a webinar hosted by the ACTA2 Alliance.
For the first time, I heard about a team in Boston working on gene therapy for MSMDS.
For the first time, I felt real hope.
We enrolled Braxley in a Natural History Study, traveled to Boston to meet the researchers and witnessed firsthand the people fighting for kids like her.
The research is promising. The team has already shown success in mouse models.
Clinical trials were expected to begin in 2026--but federal cuts to rare disease research have delayed progress.
For families like ours, time is not on our side. Braxley's disease is progressing quickly. Her arteries are narrowing, her aorta is enlarged and growing bigger everyday. We don't know how much time we have.
That is why we created this page: to share Braxley's story, raise awareness and push forward the research that could save her life--and the lives of other children like her.
This journey has been filled with heartbreak, resilience and unexpected joy. It is not easy to share. But we believe that hope grows when stories are told, awareness is spread, and when communities rally together.
In the weeks ahead, I'll also be sharing pieces of our past--the moments that brought us here, from Braxley's earliest days to the milestones and challenges along the way. Some of these memories are heavy, some are filled with light, but all of them are part of her story, and I want to honor them by telling them.
Thank you--for being here, for reading, for caring about our little girl.
Please share this page to raise awareness.
Please consider supporting the ACTA2 Alliance, a nonprofit fighting for research, family support and ultimately cure.
This page isn't only about a diagnosis. It's about Braxley--her life, her strength, her joy--and the belief that hope, backed by science, can change everything.
P.S. If you feel moved to help, you can support ongoing research through the ACTA2 Alliance here: https://www.zeffy.com/en-US/donation-form/ali-and-nate-hodson
Every share, prayer, and donation brings us closer to a cure.
