“It’s a blessing we have him”

by Symptom Advice on April 19, 2012

Like other 14-year-olds, Austin Marine likes to play sports and make people laugh. He’s glued to his cell phone and plays the drums at school. he constantly makes funny faces and jokes with his two sisters and parents.

“I’ve got a girlfriend,” Austin said, smiling.

“What’s her name?” asked Renea, his mother, knowing the answer.

“I don’t know!” The whole family erupted into laughter.

The laughter and positive words are common in the Marine household. From the outside looking in, people would not know the family is coping with Austin’s terminal illness. The 14-year-old was diagnosed with Mucolipidosis when he was 2 years old.

“They kept telling us so many different things,” Jimmy, his father, said, adding that the family did not know what to do and were told to live their lives like normal. “They told us to enjoy him while we had him.”

The couple turned to the Internet and sought other families who have children with the same illness. They also attended conferences to meet these families so they could share stories and ideas. despite their positive attitudes, Austin’s illness seemed dire and he was not expected to live very long. he and his family went to Disney World when he was 3 years old through the Make-A-Wish Foundation because the family did not know how much time they had with him.

“It’s a blessing we have him,” Renea said.

ML is an I-Cell disease that prohibits the body from making certain enzymes. This results in cells storing unnecessary material, causing damage throughout the body. This damage affects a person’s heart, bones, joints, respiratory system and central nervous system. even though the disease is not apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of material. over time, Austin has developed severe issues with his bones, heart, lungs, airways, eyes and ears, and these problems will grow worse with age.

Austin’s parents held him back in pre-school when they were learning about the disease and developing a plan for the future. The 14-year-old is now a sixth-grade student at Woodlawn Middle School in Mebane and his parents have been very pleased with the school’s willingness to meet Austin’s needs. They are also grateful for the elementary school he attended.

“When I leave South Mebane, will it close,” Austin asked his parents, smiling. even though he was joking, his parents knew there was some truth to the question, saying many people at the school missed Austin after he graduated from the elementary school.

“He’s everybody’s hero,” Renea said.

AUSTIN’S BONES are very brittle and he has had two back surgeries and one hand surgery. on his most recent back operation, Austin was in the hospital for 21 days. His parents were desperate for him to recover and promised their son anything he wanted when he was released from the hospital. Like many teenagers, Austin wanted a dog. he is now happy to have Bailey, a Yorkie, running around the house.

The family cherishes every day they have together. From attending sporting events to playing catch in the front yard, this family knows how to work together. Their faith also gives them strength and the Marines appreciate the support they receive from the first Baptist Church of Mebane.

“at church they call me, ‘Austin’s dad,’” Jimmy said.

“at school I’m Austin’s sister,” Courtney, 11 years old, said.

“Austin’s the most popular guy in Mebane,” Renea added. Austin smiled and laughed, grateful to know he can make people happy just with his presence and his caring personality.

Austin’s two sisters are always willing to help their big brother and, like any younger sisters, love to tease him.

“Austin is very funny. We like to make him laugh,” Logan, 10 years old, said. She loves “everything” about her brother.

The Marine family is participating in the National MPS Society walk/run on May 19 at Bond Park in Cary. The Society works to find cures for mucopolysaccharidoses and related diseases, including ML. This nonprofit provides support for affected individuals and their families through awareness events, advocacy and research.

Since ML is a rare disease, limited research is being done to find a cure or treatments for its symptoms.

“It’s not like cystic fibrosis where there’s a lot of money going into it,” Jimmy said. “It’s almost sad you have to do something to make people donate.”

The family hopes the event raises awareness about Austin’s rare disease and money for research. Donations can be made online at mpsrunnc.com. The family asks donors to write that their gift is in honor of “Austin Marine for I-Cell Research” in the comments section.

Despite the uncertainty the family has about the future, the Marines remain positive and encourage Austin to achieve his dreams.

“We love you just the way you are,” Renea said to her son. “You can do whatever you want, no matter what.”

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