Equal Parts Fighter and Charmer: MJ’s Story

“We think your baby’s femur might have been broken during childbirth.” These were among the first words Will and Christle heard from their medical team when their daughter, Marleigh, was born. Sadly, this is not the only traumatic news they would receive over the next two years.

Marleigh, known by all who love her as MJ, spent the first eight weeks of her life in the NICU. In addition to addressing the issues with her femur, doctors were also concerned because MJ remained in the fetal position despite their attempts to relax her muscles. She was eventually diagnosed with hypotonia, a rare genetic disorder that causes poor muscle function. Will and his own father are also afflicted with the disorder but to much lesser degrees.

There would be more hurdles to overcome. Over the next two years, doctors also discovered a hernia, a hole in MJ’s heart, and a hemangioma (noncancerous tumor) on her liver. This was the beginning of a number of surgeries and hospitalizations throughout MJ’s young life.

At two-and-a-half, MJ’s problems with eating began. Christle recalls that her daughter would put food in her mouth but she just wouldn’t eat. “She would go into panic mode over certain foods. She would throw up before even putting food in her mouth,” recalled Christle. Her situation became so critical that doctors inserted a feeding tube that bypassed MJ’s stomach entirely. She started at being fed via the tube 24 hours a day with a goal of four 1-hour feedings every day. “We’re almost there!” said Will and Christle.

It was during a speech therapy session that MJ’s parents learned about the feeding clinic at Peyton Manning Children’s Hospital in Evansville. “It was a game-changer. After only two 3-week treatment sessions in Evansville, she began eating,” said Will. “Yogurt, puddings, purees and then crackers and pop tarts, She was actually chewing and drinking and eating! We just can’t believe the progress she’s made in such a short time.

The family lived together at Ronald McDonald House Washington for a total of 27 nights while MJ underwent feeding therapies throughout the day. While Will and Christle were overjoyed at MJ’s progress, they say meeting other families going through the same thing also had a powerful impact. “We connected with two other families with children whose stories are entirely different but with the same simple goal. It was such a relief to learn we are not alone,” said Christle

Will and Christle also credit Ronald McDonald House with helping MJ during their stay. “It wasn’t just having a place to sleep and other families to relate to,” they agreed. “It was also having the support of volunteers and staff. No matter what we needed or how we were feeling, we received nothing but warmth, encouragement, and genuine concern from everyone. There was even a prize closet that gave MJ the incentive to work hard.”

MJ makes more and more progress every day. She loves people and delights in making them laugh. Will, Christle, and MJ live in Sullivan, Indiana, about 90 minutes north of Evansville. Will, a Navy veteran, is a mechanic at Hoosier Energy, and Christle is an eighth-grade science teacher.

 

Toughness is in the soul and spirit, not in the muscles.” —Alex Karras, famed Detroit Lions football player and actor