Vaila Maeve Horn

And like a butterfly, we had the privilege of experiencing you for a short time before you disappeared into the sky

Our Angel’s Story

Vaila (Vy-luh) was the sweetest baby. She had this really special energy about her that couldn’t be explained. Several nurses and doctors fawned over her at the hospital after she was born. The nurse who took her footprint even called it “perfect”. Do they probably say these same things to a lot of newborns? Most likely. Were we just as biased as other parents? Absolutely. Call it what you will, but Vaila was special.

She was so special that she was born with an extremely rare condition called Moebius Syndrome - a neurological disorder where the underdevelopment of the 6th and 7th cranial nerves causes facial paralysis and an inability to move the eyes side-to-side.

As a result, Vaila could not move her face. She couldn’t furrow her eyebrows when she was upset and she couldn’t smile when she was happy. Her condition came with other sub-symptoms as well: her right hand was much smaller than her left with four of her fingers fused together, her right nipple was smaller, she had hearing loss in her left ear, and her left eye seemed to be much more limited in movement than her right. She was also at a higher risk of having developmental and cognitive delays. Despite these challenges, kids with Moebius have normal life expectancies. We were ready to do whatever it took to give her that and more.

The same diagnosis Dane discovered on google when she was a day old, would take 37 appointments to formally diagnose since it can't be detected via genetics or blood tests. Vaila endured months of doctors poking and prodding at her to figure out what was going on.
These were just a few of those instances...
- An occupational therapist provided a special insert for her bottle so she could feed properly since she couldn't pucker her lips to create her own suction
- A plastic surgeon examined her right hand to determine how her fingers would need to be separated in order to give it a chance to grow. This would be 2 separate surgeries by the time she turned 3.
- Three hearing tests between two audiologists discovered she would need a hearing aid for her left ear (and thankfully confirmed her right ear had normal hearing)
- Several ophthalmologist visits would confirm her limited eye movement - something we needed to monitor in the long run and had the possibility of also needing surgery
This is only half of who we saw, but at the end of it, we had a team of specialists who had become quite familiar and fond of our little Vaila. Finally on July 3rd, at three months old, a pediatric neurologist confirmed that Vaila had Moebius Syndrome.

We were constantly on the go from one appointment to the next. By the time Vaila was 3 months old, it felt like she had taken more naps in her car seat than she did at home. Amidst the chaos of it all, Vaila was such a trooper. And a fighter no less. Every time she had a check-up, she did something new to try and prove people wrong. During her second physical therapy session, they were working on teaching her to roll over. The next day, she started doing it on her own. In a few weeks, she was rolling from one end of her mat to the other like she had somewhere to be. Her vital organs were in good shape and she had been gaining weight well, but her motor skills were delayed. Another sub-symptom of Vaila’s condition was hypotonia (weak muscle tone). Even though her arms and legs were strong, she still lacked the endurance to hold up her head at 5 months - something usually mastered in babies by month 3. At her best, she was able to hold her head up on her own for at least 90 seconds. She had a physical therapy session scheduled for that Monday, September 15, 2025. It hurts knowing she wasn’t able to show off how strong she was getting.

Friday, September 12, 2025 was the day that changed our lives forever. That weekend was actually full of gatherings that we were looking forward to. Because of the amount of appointments Vaila had, there was very little time to have visitors meet our newest addition, and that weekend was our chance to introduce her to so many family and friends for the first time. 

I woke up as usual around 6am, first trying to will myself out of bed and then turning over to Vaila's crib next to me. She outgrew her bassinet and had been sleeping through the night on her own for a month. The plan was for her and Veia to eventually share a room, but I wasn't ready to part with her at the time (an irony not lost on me). I gently put my hand on her and had an instant feeling of disbelief - she wasn't breathing. I yelled for Dane and called 911 as he started CPR. Paramedics arrived 4 minutes later, and she was rushed to Lucile Packard Children's Hospital - the default location for pediatric emergencies due to it's ranking as one of the best children's hospitals in the nation. Despite all that, and the team of doctors and nurses that did everything they could for what felt like hours, nothing worked. Vaila was gone. 

The coroner ruled it as SIDS. As rare as Moebius Syndrome is, SIDS is even moreso. Her pediatrician confirmed that, other than her condition, Vaila was perfectly healthy. It was like lightning struck twice in the same spot.

The agony on Veia's face when we gave her the news that evening is the only other memory that won't go away. She was only 4 years old. Vaila’s passing was just 2 months shy of Veia’s 5th birthday. For months, she'd ask why her baby sister died. We simply told her that her body stopped working. So many children's books on grief do a good enough job to explain loss and the feelings around it, but they won't satiate Veia's questions of why. And they probably never will for any of us.

Veia still acknowledges Vaila to this day. She never forgets to include her baby sister in conversations and has dedicated drawings, loveys, balloons, and so much more in Vaila's honor. As of writing this, Veia's favorite place is "Rainbowcloudlandia" where she meets Vaila in her dreams.

Many have asked how we're doing and still ask how they can help. We started this as a way to tell Vaila's story, but to also share that we are still dealing with the mental, emotional, and financial aftermath of losing our baby girl at just 5 months old. Although a year has gone by, our grieving is not done. Every milestone is now bittersweet: where our hearts take joy in watching Veia grow, they also feel incomplete knowing we won’t be doing the same with Vaila. We hope in reading this, you are able to share her angelic face and keep our baby’s memory alive.

Thank you for your thoughts, prayers, and compassion.

Love (from hearts still healing),
Veronica, Dane and Veia

Where She Rests

Vaila's ashes were spread at Sandy Beach in Oahu, Hawaii, on April 2, 2026, what would have been her first birthday. She now rests at the same beach where Dane's father, Dave Horn, once served as a lifeguard and where his ashes were spread on his birthday, October 31, after his passing in 2019. Our family finds comfort in knowing that Vaila will forever be watched over and cared for by her Grandpa Dave.

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