Diocesan News

Hastings family battling disease with awareness

By S.L. Hansen
 
HASTINGS (SNR) - When the members of the girls’ basketball team at St. Cecilia High School in Hastings suit up for a game, they write “AG2G” on their hands: “All Glory to God.”

Sophomore Lexi Vertin also adds the initials M, R, and C. That’s how she dedicates her game to three of her brothers who have been diagnosed with Duchenne Muscular Dystrophy.

Lexi is the oldest of Jason and Betty Vertin’s six children. She and Mary, 2, bookend four brothers: Max, 11; Chance, 9; Rowen, 8, and Charlie, 6. The Vertins are members of St. Cecilia Parish in Hastings.

Max was diagnosed with Duchenne in July of 2010. Betty Vertin had never even heard of the disease before then.

“I had to have the doctor spell it out for me so I could do further research,” she said.

Duchenne Muscular Dystrophy causes a progressive loss of muscle strength, eventually affecting the heart and lungs. It’s a genetic mutation that affects about 3,500 children born each year, almost always boys.

Duchenne is a challenging diagnosis for any parent to face. For the Vertins, who then had a daughter, three sons, and a baby on the way, it was a lot to swallow.

“I was 10 weeks pregnant with Charlie,” Mrs. Vertin recalled. “We decided not to have Rowen tested until after the baby was born.”

Rowen was diagnosed in January of 2011, and Charlie was diagnosed the following August. Chance never showed any symptoms, so he was never tested.

Duchenne has strengthened the family’s faith.

“Without faith, we would not be able to endure the constant losses that come from a progressive disease,” Mrs. Vertin said.

They also take comfort in knowing that God has a plan.

“With or without Duchenne, our boys have a purpose,” said Mrs. Vertin. “God gave it to them knowing they would have Duchenne, so they will fulfill their purpose.”

Lexi says her relationship with the Lord has deepened.

“I would always pray and ask Him for guidance,” she said. “Many times I would cry to Him because I didn’t understand why He would let this happen.”

She added, “It was a time for me to let things go and not be afraid.”

Mrs. Vertin said the first signs of Duchenne in her sons were delays in large motor skills like sitting, crawling and walking. Today, Max, Rowen and Charlie can all walk, but not for long.

“All three boys use a motorized scooter for long distances,” Mrs. Vertin said. “Rowen recently lost the ability to run and go up stairs.”

Fine-motor skills are also affected. In time, Max, Rowen and Charlie will lose upper body strength and the abilities that go with that.

“All three boys already have a hard time brushing their teeth,” revealed Mrs. Vertin. “Rowen, who is the most severely affected, cannot tie his shoes.”

The Vertins employ a home stretching regime to help the trio maintain as much muscular strength as possible. Regular clinic visits monitor the boys’ range of motion and check their hearts and lungs. To help slow down the disease, the boys take a variety of medications and supplements.

They also take advantage of any treatment trials the boys qualify for. All three are taking a clinical trial drug that is showing some promise. Max and Rowen have been part of an imaging study in Portland and another one involving genetic modifiers at the University of California Los Angeles.

Mrs. Vertin said that the family is committed to helping the general public understand Duchenne.

“When we are outside of our community, the boys often get ‘looks’ for using their scooter,s and for the way they walk or because they are so small,” she said. “The more people that understand the disease, the more acceptance they will experience.”

Lexi is doing her part, too, by using her athletic ability to honor her brothers who will never be able to participate in sports as she does.

“I always thought that I couldn’t help my brothers or do anything for them,” she said. “They mean the world to me.”

Now Lexi dedicates her athletic achievements to her brothers and prays for them before each event.

“I offer up my game for them. I play for them,” she said.

The 15-year-old recently ran a half marathon for Max, Rowan and Charlie. She also spoke at several different events about Duchenne to help people understand what her brothers are going through.

Next summer, Lexi and her friends are hosting an MRC 5k and fun run to help raise money for her brothers’ care.

“There will be games, basket raffle, food, entertainment, and lots of other things,” she said. “It’s a day to love the boys and let them know we all have their backs.”

She wants people to know just how outgoing and fun her brothers are.

“Max is a character. He has the ability to make anyone crack a smile or laugh,” she said. “Rowen is one of the most affectionate little boys I know. He has a special little bond with my little sister, Mary.”

She continued, “Charlie is just a cutie and has a big heart. He just makes you smile the minute you see him.”

As hard as it is, Mrs. Vertin said her family welcomes the opportunity to bear this cross because it’s part of their path to heaven.

“Jason and I feel like two of the most blessed parents there are to have front row seats watching the way our boys — all our children — are living their lives and touching the lives of others.”

They also hope more people will learn about Duchenne and help find a true remedy.

“Our prayer is that our boys will still be here to benefit from that cure,” Mrs. Vertin said.

All are welcome to follow the Vertins’ Facebook page dedicated to the boys: search for “MaxRowenCharlie” and click “Like” to follow.

“We share a lot of information about getting involved,” Mrs. Vertin said. “Always we ask for prayers and often post about specific ways we could use prayers for specific things we, or the boys, are experiencing.”

For those who can financially contribute, the Vertins recommend Parent Project Muscular Dystrophy (PPMD), which uses donations to fund research.

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