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4-year-old with Morquio Syndrome may be only child in Nebraska with the condition

4-year-old with Morquio Syndrome may be only child in Nebraska with the condition

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Fundraising walk supporting local 4-year old planned

Reina Sanchez, 4, was diagnosed with a rare condition called Morquio Syndrome. A superhero walk benefitting the girl will take place on Sept. 18.

SCOTTSBLUFF — Superheroes will gather near the Gering landfill on Sept. 18 to show support for a 4-year-old girl with a love for comic books.

Reina Sanchez, 4, has a rare condition called Morquio Syndrome. The girl is missing an enzyme in her body that breaks down sugar chains called glycosaminoglycans which typically help build bone, cartilage, skin and connective tissue.

Because the sugars cannot be broken down adequately, they collect in the cells, blood and connective tissues of the patient, eventually leading to significant damage.

“There is no cure,” said her mother, Lullie Ramirez.

The diagnosis came after the little girl began complaining about not being able to walk very far. At first, her parents and doctors thought maybe the pain was part of a growth spurt but things began to get worse.

“She was misdiagnosed twice,” Lullie said. “We had to do gene testing and they came to the conclusion that that’s (Morquio Syndrome) what it was.”

The condition is genetic, she said. Both she and Reina’s dad, Joseph, were carriers. Both had family members before them who carried the genes and passed them down.

“It’s a 1 in 4 chance that our kids will have it,” Lullie said. “There’s a 1 in 4 chance they don’t have it at all, and a half-chance they will be carriers.”

The condition also results in dwarfism, so Reina will likely stop growing by the time she is eight.

“She’ll be a little person,” Lullie said.

Additionally, the little girl must undergo weekly infusion treatments, lasting up to eight hours at a time. Her parents say that, despite being so young, she does well with the process.

“Her preschool/daycare will send worksheets,” Lullie said. “She and her dad will color. She’s doing really good.”

Despite everything she’s gone through, Reina is still happy, said her mom. In fact, her dad said, she’s been more positive than her parents.

“She likes to joke and calls herself ‘the prank master,’” Joseph said.

She and her infusion nurse often play pranks on each other, but it is Reina’s parents who usually fall victim.

“She’ll hide when we go to bed,” he said. “She’ll make it look like she’s in bed, and then she’ll jump out and scare us. That’s her go-to.”

Reina’s future won’t be easy, instead, it will be filled with surgeries. The soonest will be a bilateral hip surgery, which will require her parents to provide round-the-clock care for her because she’ll be in casts from her waist down and will require a specialized wheelchair.

Without the procedures and infusion treatments, the girl may only live to 30. With them, she has a normal life expectancy, said Lullie.

As new parents, Lullie, 23, and Joseph, 26, were overwhelmed with the diagnosis but have found a strong support system through their family, friends and the MPS Society, she said.

As far as they know, Reina is the only child in Nebraska with the condition, but the family was able to connect with another young patient in Colorado.

The couple hopes the community will come out to support their daughter on Sept. 18 for the Sunset Superhero Walk. It is $10 per adult and $5 per child to participate.

The fundraising event will be hosted by Heritage Estates and Reina campaigned for the superhero theme.

“Her and her dad are big into comics,” Lullie said. “They’re really into Marvels so she really likes superheroes.”

The event will begin near the Gering Landfill at 6:30 p.m. Participants will meet by the benches and walk toward the monument. Water and glowsticks will be handed out and at the end, Reina and Joseph will be giving away comics. Costumes are highly encouraged.

“She’s got a costume and she’s ready to wear it,” said Joseph.

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