But if you ask 32-year-old Katie Schuyler about her strength and sacrifice, she tells you this story is all about her daughter, Poppy.

Poppy’s story was briefly told in an article in Monday’s Times Observer. She’s the 22-month-old daughter of Katie Schuyler and Tyler Retterer. Shortly after birth, Poppy was diagnosed with Semilobar Holoprosencephaly, a rare diagnosis where the two hemispheres of the brain are not completely separated. Right now, Poppy eats, drinks, and takes medicine through a feeding tube.

Only, there’s even more health conditions.

“Quite a few pretty major ones,” said Katie, who was on her cell phone while at Pittsburgh Children’s Hospital, where Poppy is being treated for enduring multiple seizures recently.

Photos submitted to Times Observer Poppy, dad and mom.

Poppy has also been diagnosed with Cornelia de Lange Syndrome –causing a range of physical, cognitive and medical challenges — and epilepsy, which leads to her seizures.

At birth, Katie was only aware of Microcephaly, which is when a baby’s head is smaller than expected.

Then, there was diabetes insipidus, which causes an imbalance of water in the body.

Her brain disorder, the intractable epilepsy…

“The first hospital stay was when she was five weeks old,” said Katie. “We are on hospital admission number five right now. In March, she was flown from Warren General to Children’s Hospital for seizures. This time, we were in Pittsburgh already for a CT scan and sleep study. She had seizures (again) on Saturday the 18th and Sunday the 19th. Fortunately, she hasn’t had any seizures since we’ve been (at Children’s Hospital).

Photos submitted to Times Observer Poppy.

“We just kind of turned it into an extended stay,” said Katie.

Katie is a 2004 graduate of Eisenhower High School, and a stay-at-home mom.

“I always wanted to be a stay-at-home mom… for first steps, and first words,” she said. “It takes a lot out of anybody to go through something like this. But it’s a different kind of love, a bigger love. You have an extra love for them because of what they’re going through.”

Katie said Poppy’s strength has shown her who she is and who she can be.

“I never envisioned living my life in a hospital like I am,” she said. “I used to see parents with special needs kids all the time and I didn’t know how they did it.”

But, as Katie put it, her life is Poppy’s life.

If Poppy can go through what she is, Katie will be there with her — every step of the way.

“She’s incredibly strong,” said Katie. “She’s stronger than me.”

At the moment of the phone call, Poppy had Botox injections in her salivary glands, an airway evaluation and a bronchoscopy.

“We have some family support,” said Katie, “and I’m in the process of once we get out of the hospital, I will have overnight nursing to help me, which I haven’t had the whole time she’s been alive.”

Poppy’s father, Tyler, works third shift, which means Katie takes care of their daughter through the night time. She compared it to a newborn, physically.

“(Tyler is) an amazing father,” said Katie. “He’s doing everything that I do and he takes care of me. He’ll lose sleep just so I can have a couple hours…”

“It will be like I’m always taking care of a newborn,” said Katie. “That will be my life forever.”

Poppy’s disorders mean she may never sit up, never crawl, never talk. “She can’t hold her own weight,” said Katie. “When she gets older, if she gets older, she might say words here and there,” said Katie.

And she feels wonderful for having each and every special moment with Poppy.

“Even though my daughter is terminal, I never know how much time I have with her,” said Katie. “In that aspect, she has helped me appreciate life so much.”

“I think it’s definitely made me stronger, but also more sensitive to what other people go through,” she said.

There is a girl down the hall from Poppy’s room.

“A month older than Poppy, and her mother told me she had just been diagnosed with Leukemia,” said Katie.

“I offered for this little girl to watch Poppy get her vitals taken (because she was scared),” she said. “The mom came down to my room and was in tears thanking me.”

Katie shared a photo — of Jason Cantrell — on her Facebook page. Jason’s family is from Oklahoma, and a family that Katie — among others — talks with on an online support group.

“I actually have his mom’s phone number,” said Katie. “I probably talk to more of those families than I do people in town.”

Jason died of the same diagnosis as Poppy’s three weeks before his first birthday.

Katie said, at 22 months, Poppy has already beaten the odds.

“She’s pretty awesome!” said Katie. “Three percent live through childbirth, and only one percent live to be six months old. We’ve definitely proven them wrong.”

There are different degrees of severity of Semilobar Holoprosencephaly.

“I just hope I get to spend as much time as I possibly can with her,” said Katie. “I hope she walks someday. I hope she says ‘mom’ or ‘dad’ someday. I hope she learns some form of communication. But I will push her around in a wheelchair for the rest of her life if I have to. I do so want her to be able to communicate with me, though.

“You wonder every day, am I going to catch her next seizure?” said Katie. “I have to have eyes on her 24/7.”

But, in that 24/7, Katie does get closer to her daughter.

“I watch her eyes,” she said, “little movements that she makes. She smiles, she giggles. Every once in a while, she’ll make eye contact with you. She definitely has her own little personality. She’s a moody little baby sometimes. She tells you when she’s mad.”

The Hessel Valley Lutheran Church in Chandlers Valley will be hosting a benefit spaghetti and meatball dinner for Poppy from 4 to 6 p.m. September 13 — published originally in Monday’s newspaper. Donations may be sent to Hessel Valley Lutheran Church, 166 Hessel Valley Rd., Box 54, Chandlers Valley, Pa. 16350. Checks may be made to HVLC, with “Poppy” in the memo area of the check.

While fortunate with health insurance so far, her parents still have to pay for travel expenses, food, etc.

“Her closest appointments to see her specialists are in Erie, and that’s still an hour and a half away,” said Katie.

There are also expensive pieces of equipment — like an eye gaze machine –that insurance may or may not deem medically necessary.

“This is something that will go on for the rest of her life,” said Katie.

And whatever she can do to make Poppy’s life better, she will.

At least try.

“We’re an open book,” she said. “They might look at Poppy and say let’s check this out (for our own child). We want people to know our story.”

Of strength and sacrifice.

And love.