EAGLE, Idaho — Sandi and Adam Enzminger live in Eagle, Idaho, and they are the proud parents of six children.
"Four girls and two boys," dad Adam Enzminger said.
"They range in age from 21 to 4," mom Sandi added.
"It's awesome having all these siblings," Hannah Enzminger, 18 said. "We have the opportunity to be there for each other learn from each other. It's just a really tight family."
Tabitha is four, and the youngest of the couple's six kids. It's easy to see why she's the star of the family.
"Tabitha is just a ray of sunshine all the time," Hannah said. "She's just so precious, her smile is contagious. As soon as she starts smiling, watch out, everyone has a smile."
Tabitha was born with Trisomy 18, a condition that can cause severe developmental delays due to an extra copy of chromosome 18. Her parents have been working hard to raise awareness, so they can help other families in Idaho who may get the same diagnosis.
"It was our best pregnancy actually," mom Sandi said. "But, she came out a lot smaller than expected. Just four pounds. By two weeks, we knew for sure that she had Trisomy 18. What that means is she has a third copy of the 18th chromosome. All of us have 23 pairs of chromosomes, we get 23 from mom and 23 from dad."
According to Trisomy.org, Trisomy 18 impacts one out of every 2000 pregnancies in the United States. Symptoms include low birth weight, a smaller head, and birth defects in organs that can be life threatening. Survival rates have been historically low.
Tabitha had a heart defect at birth, but her mom Sandi was shocked by what doctors told her.
"Every professional we talked to, the first thing out of their mouth was, you know you can just do comfort care, you don't have to do any interventions, at what point do you want a DNR? I was like, no, that's not acceptable," Sandi said.
Sandi Enzminger refused to give up on her baby girl. She turned to social media for help and support. She found it.
"Thanks to the world of Facebook, we were able to connect with an online support group for Trisomy children called SOFT. Everyone there said there is an awesome surgeon in Nebraska, he does early heart repairs," Sandi said. "So, within 7 days we were in Nebraska and she had a full heart repair, and it wasn't until then that she was able to gain weight and grow and thrive because her heart was burning so many calories that she couldn't survive without it, and that's why these children don't survive very often. They aren't getting the medical intervention they need."
Four years later, Tabitha is defying the odds. Thanks to her surgery, a surgery she almost didn't have.
"Just because she may never walk, talk or eat on her own, that doesn't mean she's not changing lives and improving the world by the lives she does change," Sandi said. "I want people to know that there's hope, it's not something fatal, hopelessness is fatal. A lot of this depends on intervention, and the attitude of caring doctors."
The Enzminger's are now dedicated to raising awareness about Trisomy 18, and the importance of medical treatment. Sandi worked to get a proclamation from Idaho Governor Brad Little. March is Trisomy 18 Awareness Month. Little has signed it for the last four years.
"The goal is to educate and get the word out, and educate medical professionals, it's a learning curve," Sandi said. "Now, I'm involved with Simon's Law and Simon's Kids, being able to come alongside other families, and being there to mentor and advocate for them."
Simon's Law protects parents' rights as they oversee the medical care of their children. Governor Little signed the law into effect in Idaho in 2020. It was named for a little boy who was born with Trisomy 18 in Kansas in 2010. His parents say he was denied medical treatment due to his diagnosis, and that doctors told the couple his condition was "incompatible with life."
"We know this could happen, and we want to prevent it from happening in Idaho. Now, it won't happen," Sandi said. "Most of us become this momma bear where we will do anything and everything for our child. We don't take no for an answer."
Oldest sister Esther Enzminger was so inspired by little Tabitha and all she has overcome so far, she highlighted her in her high school graduation speech in 2020.
"Today is what we have, tomorrow is not promised," Esther Enzminger, 21 said. "She was my inspiration for that. To be able to share that and share a bit of her story in my graduation speech was quite an honor."
Sandi Enzminger knows her daughter has a bright future, a future where she will continue to inspire others.
"I think the possibilities are wide open," Sandi said. "I accept the fact that she may never be able to do certain things, but that doesn't stop me from giving her the opportunity."
Tabitha's story is giving other babies in Idaho with Trisomy 18 a fighting chance.
"She's just brought so much joy and happiness to our family, and she's just been such a blessing," Esther said. "Just seeing her smile each day, it's just been awesome."
For more information on Trisomy 18, and Simon's Law, go to www.simonslaw.org, or you can follow Simon's Law on Facebook.
Here's what the Enzmingers want parents to know:
1. Simply having an extra chromosome IS NOT fatal, but hopelessness is 100% fatal!
2. Always get another opinion. You don't know when a doctor is not aware of positive outcomes with interventions.
3. Constantly advocate for fair treatment.
4. Become an expert on every procedure, so you are equipped to make informed decisions.
5. Don't let a prenatal diagnosis change your joyous plans for welcoming your child.
6. Quality of life is not measured in physical abilities.
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