“At 20 weeks, we discovered Jupiter’s long bones were measuring short,” Marc Manross said.

After numerous tests with a variety of specialists, Jupiter’s parents were told that she had a rare chromosomal disorder known as uniparental disomy. Only one parent’s information was passed along on chromosome one.

The unique part of the situation, according to doctors, is that only half of Jupiter’s cells are showing the disorder.

“We’ve met with geneticists,” Manross said. “They told us there ‘is no written medical history on your exact condition.'”

Photos submitted to Times Observer Jupiter Manross of Chandlers Valley was born in August with a rare chromosomal disorder that has kept her in hospitals for more than half of her life. A benefit spaghetti and meatball dinner to help her family with medical expenses will be held from 3 to 6 p.m. Saturday, Oct. 17, at Hessel Valley Lutheran Church.

That could be good news. It could be that such a situation has not been noticed because it does not lead to serious problems.

Or, Jupiter’s case simply could be the first. If that is the situation, no one really knows what to expect.

But, her long bones continued to show diminished growth.

“We met with heart specialists, brain specialists,” Manross said. “We had to see a sonogram specialist monthly out of the Cleveland Clinic. Jupiter’s long bones measured smaller and smaller and smaller.”

As the pregnancy went on, Jupiter’s parents took steps in case there were problems.

Photo submitted to Times Observer Jupiter Manross of Chandlers Valley is home after spending most of her young life in hospitals. A benefit spaghetti and meatball dinner to help her family with medical expenses will be held from 3 to 6 p.m. Saturday, Oct. 17, at Hessel Valley Lutheran Church.

“We decided we needed to start talking to the NICU (neo-natal intensive care unit) at St. Vincent Hospital where we were planning our delivery so they would be prepared for any unforeseen obstacles at birth,” Manross said. “We met with them. We discussed an induction date.”

Between then and the next sonogram, “Jupiter decided she was going to gain a bunch of weight,” he said.

They pushed back inducing until 39 weeks — effectively full-term.

“Everything went well during the delivery,” he said.

Jupiter was small — four pounds, 14 ounces and “only 16-and-a-half inches long,” Manross said. But, “they looked her over and everything looked great.”

“They didn’t take her directly to the NICU,” he said. “Things were going well. We were happy.”

That lasted about half a day.

“About 14 hours later, things took a bad turn,” he said. “She was turning blue … losing oxygen. She was rushed to the NICU.”

“In 33 days, between St. Vincent NICU, and Pittsburgh Children’s, it was determined that the main issue was that she had an overgrowth of bone that was basically blocking off her nasal passages,” Manross said. “She couldn’t get enough oxygen.”

Correcting that problem required surgery.

“She underwent two surgeries at Pittsburgh Childrens to have the bone removed,” he said. “Her right nasal passage is still too small.”

That may need to be corrected in the future, but it was enough.

“Based on nationwide precedent, they’re happy that she has one nasal passage,” Manross said. “They expect she’ll need surgery by the time she’s 10 or 13.”

That she has a breathing problem means doctors are very sensitive to Jupiter being exposed to any kind of respiratory illness.

“We’re under strict instructions from our doctor not to allow visitors,” Manross said. “If she gets a cold or something, she could end up in intensive care.”

“Not many family members have met her,” he said. “We’re pretty sad about that.”

But, she was healthy enough to leave the hospital for Chandlers Valley.

“A couple weeks later she was declared able to go home,” he said. “We brought her home.”

“She’s home,” Manross said. “She’s doing well. She’s gained weight. She’s up to six pounds.”

“She’s perfect,” he said. “To Dad, she just looks perfect.”

But, he recognizes “her long bones are small. She’s absolutely tiny for her age and she’s expected to be of a small stature.”

Other than that, Jupiter’s future is difficult to read.

“They’re unable to tell us what her mobility is going to be or what she’s going to be able to accomplish with her motor skills until she develops,” he said. “It’s expected that things beyond our control and other obstacles may arise. It’s looking as though it’s going to be a long road of medical concern.”

Benefit

Since Jupiter was born in mid-August, she has spent more than a month in hospitals.

One of Amber’s co-workers asked about the possibility of a benefit to help the family.

“She approached us and asked if they could throw us a benefit dinner,” Manross said. “They were willing to step up and bless us with help and support. We were overwhelmed with appreciation and feeling blessed that they would do that for us.”

There will be a benefit drive-through spaghetti and meatball dinner from 3 to 6 p.m. Saturday, Oct. 17, at Hessel Valley Lutheran Church in Chandlers Valley. All proceeds will go to the family to help offset medical costs.

Those who would like to donate but are unable to make the dinner may send checks payable to HVLC with Jupiter in the memo line to Hessel Valley Lutheran Church, 166 Hessel Valley Road, Chandlers Valley, 16350.

“It gives us a bit of preparedness and a mindset that we have this as a support for any future obstacles,” Manross said. “It helps us and alleviates the stress on not only us, but our other children.”

“It’s more than we could possibly express in our appreciation,” he said. “The outpouring has been unimaginable.”

“We couldn’t be more thankful,” he said. “If they can’t come to the benefit, if they spread some blessings and some joy to someone that they know, that would be more of a wish than we could ever ask for.”

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