’Laundry list’ of illnesses doesn’t stop Sophia

’Laundry list’ of illnesses doesn’t stop Sophia
The Gulleys family (from left), John, Heidi, Shane, and Sophia, spend a lot of time on the road, traveling to specialists to get treatment for Sophia, who suffers from a range of illnesses and sees 17 specialists across the country.

By Jacqueline “J.P.” Montgomery
Exclusive to the La Vernia News

Benefit will aid Gulley family with medical expenses

“Momma, the baby’s dead.” Heidi Gulley shushed her daughter and apologized to the nurse. However, Sophia kept interrupting.

“Momma, the baby is with Jesus. Jesus is holding her.” The nurse began to cry, and excused herself from the room.

For months before the Gulley family went to MD Anderson in Houston, Sophia Gulley, 6, had been insisting there was a baby, and it was with Jesus. Her parents, Shane and Heidi, would tell her the baby was not dead, the baby was all right, that there wasn’t a baby just Shane, Heidi, and Sophia’s older brother, John.

When the nurse re-entered the room, she explained that four weeks before, her baby granddaughter had passed away. She had struggled with the death so much because she didn’t know if her granddaughter was in heaven. For the first time since the child’s death, she had peace, knowing that her granddaughter was with Jesus.

“Things like that happen on a regular basis with Sophia,” Shane said. “I think she’s going to affect somebody’s life. And I know there’s going to be more and more like that the longer she lives.”

And boy, does Sophia have a lot of opportunities to find lives to change. She travels with her family around the country to receive medical treatment for a long list of diseases: Neurofibromatosis type 1, Long QT type 2, several benign brain tumors, and many more illnesses that have doctors perplexed about what is happening in her body. They travel to New York and Cincinnati, and frequent the MD Anderson Center in Houston to keep up with treatments. She’s had seven surgeries, takes seven medications, sees 17 specialists, and gets speech, occupational, and music therapy. She has gone through more than most people do in a lifetime.

“She’s just kind of been this mystery,” her father said. “It’s never what you want to hear from the doctor when they say, ’Oh, we’ve never seen this before!’ Sophia’s got a laundry list of stuff going on with her, but she’s a tough one, you’d never know it.”

A child with illnesses is a lot for a young couple to handle, but Shane and Heidi have had a bit of practice. Their son, John, also had medical problems when he was younger.

“God has used John and Sophia to teach me to trust in his grace and mercy,” Heidi said. “And really to learn the meaning of ’giving it all to Christ,’ laying all our worries at the foot of the cross and being a light for him.”

The young couple consider their son, John, a warm-up for all of Sophia’s illnesses.

“When I was pregnant, people would ask if I wanted a boy or a girl,” Heidi said.

Heidi just said she wanted a healthy child. And her pregnancy with John went well, as did his birth. He was a healthy baby boy.

However, when he was 2, he became very sick. He wasn’t producing red or white blood cells; doctors thought he had leukemia.

Although Heidi, pregnant with Sophia, was supposed to be on bed rest, she was up changing sheets for John several times each night while Shane worked out of town to keep up with the bills. John was ill for about 18 months.

Then, something miraculous happened.

Doctors had decided to give John blood transfusions, Shane said. They didn’t understand how he was still alive. The weekend before the transfusions were to start, John was prayed over at church.

“And when we took him to the hospital to measure his iron levels, they said, ’Well, we don’t understand. It’s better,” Shane said.

Today, John is a healthy 8-year-old. The Gulleys credit God for his amazing recovery.

“It’s awesome to see God’s power at work,” Shane said. “It helps you wrap your head around the fact that they are kids but they’re not our kids. God gave them to us and he can take them back whenever it’s their time to go back. We just have to be thankful for the time that we get with them.”

John’s experience makes him a great supporter for his little sister.

“John is the most awesome big brother ever, because he’s been through all that stuff,” his dad said. He holds her hand, tells her it’s going to be all right. “You couldn’t ask for a better big brother.”

Sophia’s illnesses are much more severe and mysterious than John’s. Heidi and Shane didn’t know she was sick right away, but the doctors suspected neurofibromatosis from birth, because she had several café au lait spots.

Heidi noticed Sophia’s gross and fine motor skills were very delayed. At 18 months, Sophia was diagnosed with a genetic disorder, neurofibromatosis type 1.

Although it’s not rare, the way it presented in Sophia was very rare, Heidi said.

Sophia’s case is published in several textbooks and is involved with several medical studies; small case studies have been written about her by doctors at MD Anderson, the Cincinnati Children’s Hospital, and the CHRISTUS Santa Rosa Children’s hospital.

She may be a medical mystery, but the most fascinating thing about Sophia isn’t medical, but spiritual.

“She has a unique relationship with God, in that her trust is that of which only a child could have,” her mother said. “She is not burdened by what the world thinks or what is the norm. She has faith like Elisha [2 Kings 6:17]; her eyes are open to see things that we don’t allow ours to see because of the burdens of this world, worries, mistrust, and ultimately Satan’s ability to creep in with doubt that we really don’t need God.”

Sophia’s love of God manifests itself in the way she cares for other people.

“Wherever she goes, she meets other kids who are sick and have other things going on,” said Shane. “At night, it’s funny to hear her pray because she prays differently than anybody else that I know. When she prays, she’ll say, ’I hope foré’ and then fill in the blank. ’I hope for the kid in the ER with the tube in his nose.’”

Sophia also prays every night for her friend, Tatum, who has one leg and other medical issues.

“She prays for so many people,” her dad said. “The list gets longer and longer. It amazes me how she doesn’t forget.”

Sophia’s long list of prayers, and events such as her encounter with the nurse at MD Anderson, lead Heidi and Shane to believe that she is truly blessed.

Sophia’s Light benefit July 20

Join friends and family at the barbecue/concert benefit, Sophia’s Light, to be held on Saturday, July 20, from 3-8 p.m. in the La Vernia City Park on San Antonio Road in La Vernia.

This benefit fund-raiser is for Sophia Gulley, who has neurofibromatosis, Long QT, and several brain tumors. Everyone is invited to support a good cause and enjoy hours of Christian music, with food by Texas Pride.

For more information, contact J.P. Montgomery at 210-454-8478 or montgomeryjp@rocketmail.com.