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Longmont Girl with Unique Ailment Named 2018 Happy Smackah

March 2, 2018 GMT

If you go

What: 2018 Happy Smackah 5K Fun Run

When: 8 a.m. May 12

Where: Lake McIntosh, 1905 Harvard St., Longmont

Cost: Adult registration is $35

More info: To register or donate, visit HappySmackah.com

Clara Shipp, 5, has been on two Flight for Life helicopter rides, countless trips in the ambulance, a medically-induced coma and several stints in intensive care units, but she still has an infectious smile.

That’s what makes Clara the 2018 Happy Smackah, the beneficiary of the annual Happy Smackah 5K run set for May 12.

Both of Clara’s moms — Andrea Shipp and Jennifer Goerlitz — teach at Rocky Mountain Elementary. The two are busy, shuttling Clara between therapies, teaching and caring for Clara’s older brother, Ethan, 8.

Even before Goerlitz had Clara, both she and Andrea knew the pregnancy wasn’t going how it should.

“In utero, she didn’t move ... at 37 weeks, I was induced and then when she was born, she didn’t cry, which was obviously a large cause for concern,” Goerlitz said. “She later went to the NICU for jaundice and then we went home. She wasn’t meeting any milestones. At her one-month checkup, I’d said, ‘Something’s really wrong.’”

At 10 months old, Clara started having seizures and she was hospitalized at Children’s Hospital Colorado in Aurora every three months for the common cold.

Clara saw neurologists, geneticists, pulmonologists and other experts, but no one could tell Andrea and Jennifer what exactly was making their little girl so sick.

When Clara was 1 ½ years old, doctors told her moms that she couldn’t eat anything because she would vomit the food and could choke on it. She had surgery to insert a feeding tube.

For a while, everything seemed to be OK, even though the family was still making the trek to Children’s every three months.

Then, in 2016, Clara’s mom fed her through her feeding tube before planning to go out to dinner with the family when Clara started to vomit and aspirate everything into her airway. She became unresponsive. Firefighters and paramedics intubated Clara’s trachea, but she went into cardiac arrest. She went by Flight for Life to Children’s and survived, but was very sick.

Clara came home in a wheelchair, but continued to be hospitalized three times in 2017, including several ambulance rides and another Flight for Life helicopter trip.

It has been hard on Clara’s family, including her brother.

“I have these triggers, like I hear a siren and I can recognize what it is and I get kinda scared, like, ‘Oh no, now who is it?’” Ethan Shipp said.

Goerlitz said that the stress of so many hospital visits and ambulance rides is palpable.

“It takes a toll on all of us and him. It’s hard for us and we’re not 8. But, it’s normal to Ethan. They have a normal sibling relationship. They together and get ornery together and fight with each other,” she said.

That sibling relationship includes Ethan being protective of Clara when other kids make fun of her or pick on her, even if he were reticent to admit it.

“I’m the only one who can — only family can do that,” he said.

In the summer, the family traveled to the National Institute of Health in Maryland for more tests and discovered that Clara is truly unique.

“They found that her whole face has a neuropathy so all of those nerves are really damaged, which is why she can’t swallow and has trouble breathing. And they found that ... beginning in her deltoids, her muscles are damaged and she begins having muscular myopathy in her deltoids. It dumbfounded everybody,” Goerlitz said.

Andrea Shipp added that usually, a patient has either a neuropathy or a myopathy. Clara is the only person who has been found to have both issues.

“They’ve done genetic testing ... they’re thinking that her faulty genes — for lack of a better word — are new genes that haven’t been discovered,” Goerlitz said. “So right now, she has no prognosis. She has no diagnosis.”

Clara started walking short distances in February 2017. She talks and seems fine cognitively, a happy-go-lucky kid who enjoys Disney princesses and occasionally annoying Ethan. Goerlitz and Andrea Shipp plan to send her to kindergarten next year with a paraprofessional.

She gets nutrition through her feeding tube, eating occasional bits of food under the supervision of one of her moms so she can understand the taste of different things.

When she grows up, Clara wants to be a “doctor that goes home at night” and a mother to babies.

She packs her own lunch for preschool — empty tupperware containers. She takes out her lunch and pretends to eat with her friends when it’s lunchtime.

Clara just got a motorized scooter, which allows her to be more independent when she runs out of energy to walk — or run — around.

Her moms said that the donations made through Happy Smackah will help immensely with the mounting medical and living costs.

“It’s so humbling to know that so many people think about Clara and wanted to nominate her,” Goerlitz said. “When we have taken extended leaves from work, we don’t have enough sick leave to cover that. It will help with that. At some point, we’re going to probably need to get a lift in our house and in our van for her scooter.”

Clara and her family plan to be at the May 12 Happy Smackah 5K. Clara said she is most excited that the T-shirts will be her favorite color: pink.

She especially can’t wait to see her brother and “even the boys” have to wear the pink shirts.

The Happy Smackah Fun Run is an annual fundraiser that began in 2011 to benefit St. Vrain Valley teacher Dan Cribby, who had his arm and shoulder amputated and needed skin grafts after developing a systemic bacterial infection.

Cribby recovered and is teaching again. The Maine native calls a person with a positive attitude who enjoys life a “happy smackah.”

Goerlitz and Andrea Shipp said that caring for Clara has benefited the whole family in the long run, teaching them compassion, patience and perseverance.

“The fact that she’s still living is a complete miracle and it has dumbfounded people that she’s still alive,” Goerlitz said. “Whenever we feel like we want to give up or we’re having a bad day, you can’t really give up or have a bad day because your daughter doesn’t.”

Karen Antonacci: 303-684-5226, antonaccik@times-call.com or twitter.com/ktonacci