Ali Hygema was born with Trisomy 13, meaning she has an extra 13th chromosome. (Photos provided)

WARSAW — The moment her daughter, Ali, was born, Mandi Hygema, Warsaw, knew something was different.

“When she first arrived, I noticed she looked different,” she said. “They didn’t let me hold her as planned so I knew something was wrong.”

One by one, the doctors and nurses began noticing things: Extra fingers, an undeveloped eye, a cleft palate. For Hygema, moments normally filled with joy were replaced with confusion and fear.

Ali loves to cuddle.

Ali was transported to Lutheran Hospital, where a geneticist examined her and gave an initial diagnosis.

“She didn’t have the test results yet, but the geneticist put all the clues together and said that Trisomy 13 was most likely Ali’s diagnosis. When we asked about her possible survival, we were not given any hope; she was not expected to make it home.” Hygema said.

Trisomy 13, in which a child has an extra 13th chromosome, manifests in different ways. At 27 months, Ali still does not crawl or walk. She does not respond to sound and has almost no vision. She also experiences seizures that require constant monitoring, plus severe allergies and asthma. She cannot have food or liquids by mouth because of aspiration, so all feedings go through a tube in her stomach.

Ali’s parents were devastated with their initial research on Trisomy 13. However, they soon learned that online research is not always right.

“There’s a lot of information on the internet and much of it is outdated and incorrect,” Hygema said. “Really, the only website that you can trust is www.trisomy.org.“

As with many special-needs children, Ali’s family has faced adjustments: adding a wheelchair ramp, buying a whole-house generator so they never go without power for Ali’s medical equipment, attaching a HEPA filter to the furnace and replacing the carpet with laminate to rid allergens.

Breathing treatments are a big part of Ali’s everyday life, plus seizure meds, allergy meds and several others. She also needs special equipment for baths, sitting and standing. Two therapists visit weekly, challenging her to gain more strength and further develop.

Despite her limitations, Ali is an outgoing, vivacious toddler.

“She tries to be happy all the time, even when she doesn’t feel well or when she’s had surgery,” Hygema said. “She tries to play as much as she can in her own way, which is rolling on the floor. She recently learned to grab toys and bring them to her mouth, which made us very proud. She is currently learning how to sit by gaining strength and balance.”

Ali smiles and laughs and especially loves to cuddle.

“Since she can’t see, cuddling is how she knows people are with her,” Hygema said. “She can only see light, so if you take her to a window or outside, she’s just so happy. She loves light.”

Over the last two years, Hygema has experienced many emotions.

“I used to cry a lot about the things she can’t do and won’t experience.” Yet, Hygema has learned to see the good in Ali’s situation. “We are just so thankful that she is still here with us. People often ask me how I do it. I tell them that when you love someone so much, you do what you have to. You figure out just how strong you are when it’s your only choice. You learn to lean on friends, family and your faith.