Seek­ing joy

A se­ri­ous birth de­fect is not stop­ping a sixyear-old girl from liv­ing her life to the fullest.

The Star Malaysia - Star2 - - Family - By KAIT­LYN SCHWERS

IN A class­room full of girls in tu­tus and tights, Mira Fencl blends right in ... a plie, arms in first po­si­tion, fol­lowed by del­i­cate steps to the side.

Like the rest of the stu­dents, the girl fol­lows the di­rec­tion of her dance in­struc­tor, right down to the fi­nal bow.

This is when an on­looker might spot a clue that Mira dif­fers from the other dozen or so other kids at Step­pin’ Out dance stu­dio. A Min­nie Mouse back­pack, strapped to her shoul­ders, comes into view when she bends for­ward. From that pack, a thin tube snakes up to her chest.

The con­tents of the whim­si­cal back­pack are keep­ing the young girl alive.

Mira has short bowel syn­drome, and her doc­tors say it will shorten her life. For most of her life, her par­ents have shielded her from the germs that can take her life. But their daugh­ter, they de­cided, de­served to have mo­ments of a happy child­hood.

And that tube, barely vis­i­ble un­der her leo­tard, is clearly not on Mira’s mind when she skips off to ad­mire one of the small dogs that hang out in the lounge at the stu­dio.

Mira’s fam­ily and close friends, many of whom re­cently cel­e­brated her sixth birth­day, de­scribe her life as an on­go­ing mir­a­cle.

On a pause be­tween prac­tice, Mira is more fo­cused on talk­ing about dance, which is fairly new to her life, than dis­cussing her med­i­cal is­sues.

Her favourite part of the class is “the ballet parts,” she says, bright blue veins con­trast­ing against her pale arms un­der the stu­dio lights.

Meghan Fencl, Mira’s mother, has done her best to pro­tect her daugh­ter from in­fec­tion. But Mira is ea­ger, at six, to take part in the ac­tiv­i­ties other young girls em­brace, and she’s ready to make friends.

In dance class, Fencl sees her daugh­ter hold­ing hands with other girls and skip­ping to the beat of mu­sic. Mira seems con­tent but, Fencl says, Mira’s con­di­tion can turn on a dime.

“We know, un­for­tu­nately, the end re­sult,” Fencl said, when dis­cussing her ac­cep­tance that her daugh­ter will not live long. “It just is, so we’ve kind of ac­cepted it.”

At the dance stu­dio, Michelle Upte­grove, Mira’s teacher and a fam­ily friend, agrees it’s been a good day for her stu­dent.

“Lots of en­ergy to­day,” Upte­grove says.

Be­fore head­ing into dance class, Upte­grove re­minds Mira to put on a pair of tap shoes as well as a layer of hand sani­tiser. In­side her back­pack, Mira car­ries a pump and an IV tube at­tached to a 2-litre fluid bag for her nu­tri­tional needs. The bag is nearly empty.

Mira was born with her small and large in­testines out­side of her body. She has gas­troschi­sis, a birth de­fect that af­fects nearly 2,000 in­fants born each year in the United States, ac­cord­ing to the Cen­ters for Dis­ease Con­trol and Preven­tion.

Fencl was 10 weeks preg­nant with Mira when she learned through her first ul­tra­sound that her baby would be born with the de­fect. What Mira’s par­ents and doc­tors saw ap­peared to be the shape of a flower out­side the baby’s belly. The con­di­tion is typ­i­cally treated with surgery to place the or­gans back in­side the body cav­ity.

“In her case, we were told the en­tire preg­nancy that’s what to ex­pect. That’s not what hap­pened at all,” said Fencl.

Mira lost 87% of her in­testines, which had been ex­posed and be­came necrotic. Be­cause of the con­di­tion, she was di­ag­nosed with short bowel syn­drome.

The cause of gas­troschi­sis re­mains un­known, and there is no cure for short bowel syn­drome.

As a re­sult, the six-year-old re­ceives treat­ment through to­tal par­enteral nutri­tion, a feed­ing method de­signed to by­pass the gas­troin­testi­nal tract. The nu­tri­tional flu­ids are pumped through a tube con­nected to her heart, reach­ing the blood­stream. It helps her func­tion.

But the girl’s mother says it also hurts her daugh­ter’s liver. The young girl also has chronic kid­ney dis­ease and hy­per­in­su­line­mia. And with a weak­ened im­mune sys­tem, Mira’s fam­ily says they must be ex­tra care­ful to pro­tect their daugh­ter from get­ting sick.

“If you and I get a fever, we have a flu, we have a virus. If she gets a fever, she could have a blood in­fec­tion that goes and causes sep­sis through­out her en­tire body be­cause that line she has is con­nected to her heart,” Fencl said.

She said there were times Mira’s mother was told her daugh­ter “wasn’t go­ing to make it.”

On a good day, Mira ap­pears happy and healthy.

But Fencl says peo­ple don’t see her daugh­ter’s day-to-day life. Mira un­der­goes se­vere fa­tigue and vom­its stom­ach acid each day. She spends most of her time at her home re­ceiv­ing care from a full-time nurse. De­spite it all, Fencl says her daugh­ter is still here. Slowly but surely, Fencl says, her daugh­ter is step­ping out into the world.

“We were keep­ing her away from other chil­dren,” she said. “We weren’t let­ting her go into the chil­dren’s class­room at church. We weren’t let­ting her go into the play area at the mall be­cause of all of the germs. But, she was lonely and she was mis­er­able.”

Upte­grove, a life-skills teacher, is Mira’s home teacher. She came across an op­por­tu­nity when she was dis­cussing Mira with Phyl­lis Balagna, a school board mem­ber and owner of Step­pin’ Out Dance Stu­dio. Balagna in­vited the six-year-old to at­tend her “Broad­way Ba­bies” dance class on Mon­day nights, where chil­dren learn tap dance and ballet.

“The way she’s been danc­ing, it’s like she’s been here all year,” Balagna said. “She’s re­ally smart. Re­ally bright. We love mak­ing things hap­pen for chil­dren like Mira.” – The Kansas City Star/ Tribune News Ser­vice

Mira (sec­ond from left) was born with her in­testines out­side her body, and tak­ing part in dance les­son is a high­light for her. — TNS

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