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Back-to-school wishes for ill 8th-grader

Kyle Moroney • Jul 21, 2015 at 11:22 AM

She came home from a friend’s house two days later feeling ill with continuous vomiting and was taken to the hospital.

Gina’s health declined drastically and she has spent the past two months being hospitalized.

Gina, an eighth-grader at White Pines, was all smiles when she returned home earlier this week from Mary Free Bed Hospital in Grand Rapids, where she had been since Dec. 29.

While she is still undergoing several physical and speech therapies during the day, Gina will return to school two hours a day beginning Monday, her 15th birthday.

“Ahhh,” she gleamed with excitement about going back to school. With limited speech, Gina’s sparkling smile exudes her fervent spirit about seeing her friends, classmates and teachers.

The 14-year-old walked down the eighth-grade corridor during a school visit on Thursday to the loud applause of all of the school’s fellow eighth-graders.

At the end of the hall, several students presented colorful origami cranes they made for Gina; explaining that, if you make 1,000 cranes, your wish will come true.

One of the girls said, “And we all wish that you’ll be able to come back to school soon.”

Josie Cooper said she’s missed her best friend and fellow eighth-grader a lot, and looks forward to having Gina back home and in school. Josie said they’ve known each other since sixth-grade.

“She’s a fun-loving person and a lot of people like her,” Josie said.

“She’s fun to be around,” added another friend, Mich’l Marsh. “She’s awesome to hang out with.”

Uncovering years of mysterious illnesses

When Gina was about a year old, her parents, Aaron and Brenda Twa, discovered she had some health problems — such as poor eating, excessive sleepiness, continuous vomiting, shaking and being extremely sensitive to light. Throughout the years, Gina would be in and out of the hospital — suffering from numerous “episodes” that would last anywhere from two days to a week and a half, her dad said.

She had a myriad of blood tests, as well as 3-5 biopsies by the time she was 4 years old, and another biopsy when she was 13. No one could determine the cause of the girl’s illness.

“Anytime she got sick, her blood sugar would plummet extremely low,” said Heather Twa, Gina’s stepmom.

Gina was taken to North Ottawa Community Hospital during her most recent episode in December. About four days later, she was sent to DeVos Children’s Hospital in Grand Rapids. Within hours, she was flown by helicopter to the University of Michigan C.S. Mott Children’s Hospital.

“Her health was getting worse and it didn’t seem like we were getting anywhere,” Aaron Twa said. “We were quite concerned for her physical health.”

Within a matter of days, Gina was no longer able to walk, talk, feed herself and lift her head or her arm. Gina’s “thumbs up” or “thumbs down” and eye blinks were her only means of communication.

“I thought I was losing my child,” her tearful mother said. “I was thinking, ‘Gina — she’s really sick.’ And I felt helpless.”

Gina was put in the intensive care unit at Mott’s; and, after one week, she had partial liver failure and “dangerously high” ammonia levels in her blood — which could have led to brain damage, her parents said.

Through various tests and MRIs, the Mott’s doctors discovered the root of Gina’s vastly deteriorating health: dihydrolipoamide dehydrogenase deficiency, or DLD. DLD is a type of “maple syrup urine disease” that is caused by mutations in the DLD gene and the inability to properly process certain amino acids, according to the U.S. National Library of Medicine. If untreated, the rare genetic condition can lead to seizures, coma and death.

Doctors also diagnosed Gina with glutaric academia type 2, or GA2 — another rare disorder that interferes with the metabolic break down of protein and fats.

These two disorders have caused encephalitis (brain swelling) and hyperanemia in Gina.

“We could let out that deep breath we’ve been holding for the past 14 years,” her mother said of finally finding the cause of Gina’s sickness.

After the discovery, Gina was put on dialysis for about three days. From there, the 14-year-old showed “scary slow” signs of improvement, her dad said.

The road to recovery

Gina left Mott’s on Dec. 29 after a two-week stay, and was directly transferred to Mary Free Bed Rehabilitation Hospital in Grand Rapids — where she had been until earlier this week.

“Her health was better,” Aaron Twa said, “but she still couldn’t walk, she couldn’t hold her head up, she couldn’t go to the bathroom on her own. It’s amazing — look at her now. She’s doing great.”

Gina maintains a low-protein, high-carb diet, and will need to take a variety of prescribed medicines throughout her life.

After nearly six weeks of rehabilitation — with multiple daily physical, speech and occupational therapies, which she will continue at home — Gina is now able to perform those simple tasks that she was able to prior to her initial episode in December. Her splintering speech remains, but is improving.

While Gina spent the past two months at various hospitals — so did her family members. Schedules were re-arranged in order for Gina to have a parent at her side the entire time.

“She hasn’t been alone one night,” her father said. “We’re all working as hard as we can together to keep everything together.”

Not only did Gina’s family band together, so did her family at White Pines Middle School.

WPMS special education teacher Sue Constantine traveled to Mary Free Bed after school hours, twice a week for the past three weeks, to help Gina with her schooling.

“She’s a great girl — she’s full of life,” Constantine said of Gina. “She’s just a joy to work with. She has a lot of spark to her.”

The WPMS Student Council organized flower sales and bake sales last month, raising nearly $1,000 to benefit Gina and her family.

“I’m really proud of the students for coming together,” said Sue Ann Siebert, a teacher and eighth-grade Student Council advisor. “It feels good to know that she’s not alone. We’re all pulling for her to get well.”

“We want to thank everyone who helped,” said Gina’s mom. “We’re so appreciative.”

Gina’s frail health never broke her unwavering smile and brave spirit, family members said.

“She’s been laughing since that first day she could laugh and she hasn’t stopped since,” Heather Twa said.

Tribune Multimedia Editor Mark Brooky contributed to this story.

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