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One child was born with an extremely rare genetic disorder. The other was born with two holes in her heart. The community that surrounds them is stepping up to provide support. Hadley Gruber, born in September 2016, has a rare genetic condition and is the...

Folks rally to help 2 Slate Belt infants in need

One child was born with an extremely rare genetic disorder. The other was born with two holes in her heart. The community that surrounds them is stepping up to provide support. Hadley Gruber, born in September 2016, has a rare genetic condition and is the...

Folks rally to help 2 Slate Belt infants in need

One child was born with an extremely rare genetic disorder. The other was born with two holes in her heart.

The community that surrounds them is stepping up to provide support.

Hadley Gruber, born in September 2016, has a rare genetic condition and is the focus of a community fundraiser to help her family with expenses. (Courtesy photo) 

Multisport Fitness in Upper Mount Bethel Township is sponsoring an indoor cycling class at 11 a.m. Saturday, Jan. 21. Proceeds will go to the two families in need.

For those who choose not to participate in the class, there are online GoFundMe campaigns where people can make donations for baby Hadley and baby Charli.

When their daughter Hadley was born in September, Bangor resident Cameron Klingle said she and her fiance Jason Gruber had no idea the baby would be diagnosed with Costello syndrome.

Costello syndrome is an extremely rare disorder that affects multiple organ systems. The condition is characterized by growth delays after birth, short stature and extra loose skin on the neck, hands and feet.

Only 350 people affected with this syndrome have been reported worldwide, according to the National Organization for Rare Disorders.

"We call her our lottery baby," Klingle said.

Klingle has not been able to work since September and has been living at the Ronald McDonald House in Philadelphia while her daughter has been receiving ongoing treatment at Children's Hospital of Philadelphia.

Gruber, a custom cabinetmaker, drives from Bangor to Philadelphia on weekends, Klingle said. A family member began an online fundraiser to help ease the financial strain brought on by the situation.

Slate Belt man finds birth mother 39 years later

In October, Stephanie and Kyle Bartholomew welcomed their daughter Charli into the world.

Their daughter will need open heart surgery in the coming months to manually close the holes in her heart so they do not lead to pulmonary hypertension and heart failure.

A family friend started a fundraiser to help with the anticipated medical expenses.

When Jennifer Schweitzer, owner of JMS Salon and Spa and a spin instructor at Multisport Fitness, saw Facebook posts regarding the babies, she said she felt the need to do something.

Schweitzer gave birth to twins in September.

"I really had a hard time emotionally scrolling by them," Schweitzer said. "I was thinking I should do more than just donate."

She approached the owner of the fitness center and two of her fellow instructors, Schweitzer said, and everyone immediately agreed to set up the fundraising spin class.

The $25 class will be a one-hour session and registration is required. All proceeds will be split between the two families in need.

By the Dozen Family Restaurant and Inn in Upper Mount Bethel is donating food for the event and The Belt and Beyond publication provided free advertising, organizers said.

"I can't say enough for the way the community has reached out for us," Klingle said as she choked back tears. "If it wasn't for the community right now, I don't know what I would do."

Folks can register for the class at msfgym.com.

John Best is a freelance writer. Find lehighvalleylive on Facebook.

 

 

Our editors found this article on this site using Google and regenerated it for our readers.

Publish Date : 28 Şubat 2017 Salı 15:47

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